I find that when I'm stressed out my skin just crawls - it gets itchy with no rash. It just IS itchy. This is something that wasn't always so.... I wonder if it is psychosomatic or is actually a warning sign to chill out? Anyone else have this?
Wednesday, 20 October 2010
Thursday, 14 October 2010
Breakouts.
Stress is starting to kill me here. My 3+ year boyfriend and I almost broke up. My legs and my stomach has broken out - this was taken days ago, it has gotten worse....
big red and blotchy. I am thankful it is not my neck (tho it is itchy or sensitive which is not a good sign) and my fingers are all scabbed from my picking them from the worry and stress.
I am also in a huge transitional phase of my life. This breakout is a by product of all the change and worry and stress. I am trying to manage it with good food (trying, almost in vain) to cut out sugar. And staying away from alcohol completely. Lots of water. I also have a new yoga pass and I am going to do some reiki next Monday. I feel so out of sorts/ Are you going through the same thing? I hear it is to be blamed on the stars and planets (Jupiter and Uranus are apparently making the world have huge change and forcing it against most people's will...) If you believe that.
Regardless I am trying to practise what I preach and make sure I don't let this break out get to me.
More probiotics and more pine bark.
ugh.
Though I am trying the dairy free BioK yogurts - the soy one that is mango flavour was good! I will try the vanilla rice one soon and tell you my verdict...
Breakouts.
Stress is starting to kill me here. My 3+ year boyfriend and I almost broke up. My legs and my stomach has broken out - this was taken days ago, it has gotten worse....
big red and blotchy. I am thankful it is not my neck (tho it is itchy or sensitive which is not a good sign) and my fingers are all scabbed from my picking them from the worry and stress.
I am also in a huge transitional phase of my life. This breakout is a by product of all the change and worry and stress. I am trying to manage it with good food (trying, almost in vain) to cut out sugar. And staying away from alcohol completely. Lots of water. I also have a new yoga pass and I am going to do some reiki next Monday. I feel so out of sorts/ Are you going through the same thing? I hear it is to be blamed on the stars and planets (Jupiter and Uranus are apparently making the world have huge change and forcing it against most people's will...) If you believe that.
Regardless I am trying to practise what I preach and make sure I don't let this break out get to me.
More probiotics and more pine bark.
ugh.
Though I am trying the dairy free BioK yogurts - the soy one that is mango flavour was good! I will try the vanilla rice one soon and tell you my verdict...
Wednesday, 6 October 2010
the link for this particular brand is here: http://well.ca/products/vivitas-woman-stressless_12454.html
It has these ingredients:
PHELLODENDRON BARK (Phellodendron amurense)
Latin: Phellodendron amurenseChinese: Huang bai
WHAT IT DOES: Phellodendron bark is bitter in taste and cold in action. It reduces inflammation and dampness, especially from the lower parts of the body. It has broad-spectrum anti-bacterial and anti-viral activity.
SAFETY ISSUES: Do not use during pregnancy. Avoid long-term use due to alkaloid content.
STARTING DOSAGE:
• Dried powder: three to10 grams per day
• 4:1 dried decoction: one to three grams per day
Magnolia
Magnolia extract is rich in the phytochemicals honokiol and magnolol, which have numerous health benefits. One of the most impressive benefits is their ability to alleviate stress while producing a calming effect. Dozens of animal studies have shown that they act as a non-addictive, non-sedating anxiolytic (anti-anxiety and anti-stress) agent at low doses.
That means a small dose of Magnolia extract can help calm your nerves and alleviate anxiety, without making you sleepy. The beauty about these two phytochemicals is that honokiol exerts an anti-anxiety effect, and magnolol exerts an antidepressant effect
So then what is Relora?? Here's the thing - when I went looking for Relora it turns out it's just the combination of these two things?
"Relora ®is a proprietary, patented, standardised extract of 2 plants - Magnolia officinalis and Phellodenron amurense. Studies have shown Relora to be a safe, effective, rapid-acting, non-sedating supplement, which promotes relaxation, calm and a feeling of well-being."
http://www.relora.co.uk/what%20is%20relora%20page.htm
DO NOT TAKE RELORA UNTIL YOU HAVE TALKED TO YOUR DOCTOR:
- If you are pregnant or nursing
- If you are currently taking an MAOI prescription medication
- If you have been diagnosed with a serious health issue like severe anxiety, depression or other mental health disorder and have not yet consulted with your physician about taking a dietary supplement
- If you have an autoimmune disease and are currently taking medication
*sorry for the poor resolution - my iphone sometimes is mean to me.
the link for this particular brand is here: http://well.ca/products/vivitas-woman-stressless_12454.html
It has these ingredients:
PHELLODENDRON BARK (Phellodendron amurense)
Latin: Phellodendron amurenseChinese: Huang bai
WHAT IT DOES: Phellodendron bark is bitter in taste and cold in action. It reduces inflammation and dampness, especially from the lower parts of the body. It has broad-spectrum anti-bacterial and anti-viral activity.
SAFETY ISSUES: Do not use during pregnancy. Avoid long-term use due to alkaloid content.
STARTING DOSAGE:
• Dried powder: three to10 grams per day
• 4:1 dried decoction: one to three grams per day
Magnolia
Magnolia extract is rich in the phytochemicals honokiol and magnolol, which have numerous health benefits. One of the most impressive benefits is their ability to alleviate stress while producing a calming effect. Dozens of animal studies have shown that they act as a non-addictive, non-sedating anxiolytic (anti-anxiety and anti-stress) agent at low doses.
That means a small dose of Magnolia extract can help calm your nerves and alleviate anxiety, without making you sleepy. The beauty about these two phytochemicals is that honokiol exerts an anti-anxiety effect, and magnolol exerts an antidepressant effect
So then what is Relora?? Here's the thing - when I went looking for Relora it turns out it's just the combination of these two things?
"Relora ®is a proprietary, patented, standardised extract of 2 plants - Magnolia officinalis and Phellodenron amurense. Studies have shown Relora to be a safe, effective, rapid-acting, non-sedating supplement, which promotes relaxation, calm and a feeling of well-being."
http://www.relora.co.uk/what%20is%20relora%20page.htm
DO NOT TAKE RELORA UNTIL YOU HAVE TALKED TO YOUR DOCTOR:
- If you are pregnant or nursing
- If you are currently taking an MAOI prescription medication
- If you have been diagnosed with a serious health issue like severe anxiety, depression or other mental health disorder and have not yet consulted with your physician about taking a dietary supplement
- If you have an autoimmune disease and are currently taking medication
*sorry for the poor resolution - my iphone sometimes is mean to me.
Tuesday, 5 October 2010
More emails from great people from around the world who also have DD - our thoughts over email shared for your interest:
Hi Adrianna!My name is Tsvetelina, Eastern Europe.I was diagnosed with Darier's disease 10 years ago,now I'm 29.When I was searching on the web for new information and treatment of DD, I found the site www.skinpatientsalliance.ca and your postings.As I also have the disease, I think and hope that we can exchange information about therapies and treatment of DD and help each other.
Like you, I've seen a lot of dermatologists,most didn't know about DD or know a few.After being diagnosed with DD, I hardly wanted that biopsy was wrong.I even took second biopsy,still the same - Darier's disease.So I had to admit I should live with it and find a treatment wich will work for me.That isn't easy,as you know that for now,there's no total cure of DD, only supporting treatment unfortunately.
With the years I have outbreaks more often,especially when I have my period.I've been taking oral retinoids - Neotigason,but only for 2-3 months because it caused me hard loss of hair.I also used topical retinoids -Retin A,Adapalene also known as Differin ( I still use it,it gives me good results) and others.I also use corticosteroids as cream - Fucicort ,wich also contains antibiotics,and I also have been on injections with corticosteroids,didn't help a lot.I have had procedures of chemical peeling,that also didn't help me a lot.As I didn't find the "right therapy", I keep searching .And I try to stay positive and believe that somehow things will be better.
I also take vitamins and supplements but not regularly.From 2 weeks I'm taking 4 Life Transfer Factor Plus( www.4life.com) and I expect a good result.As I learn in your blog about your Hypoallergic diet ,I'm interested in what exactly it consist(I never made a diet for DD).Also about the vitamins and supplements you're taking,in what doses,and for what periods of time?Now I'm also thinking on the possibility for a surgery with Yag Laser,I read articles that it works on DD and even a complete remission can be achieved.
Hope you'll write me back and we can give a hand on our common problem - Darier's disease.
Best regards,
Tsvetelina
-------------------------------
Adrianna
---------------------------------------------
Hi Adrianna!Thank you for your e-mail!
About the Yag laser I'll send you some links to websites,where you can find detailled information:
http://www.asclepion.com/root_corporate/pdf/studies/MCL%20Efficacy%20of%20erbium%20laser%20ablation%20in%20darier%20disease%20and%20hailey-hailey%20disease.pdf
http://webcache.googleusercontent.com/search?q=cache:6eA19evcLAkJ:www.ehow.com/way_5670338_laser-therapy-darier_s-disease.html+laser+therapy+for+darier's+disease&cd=2&hl=bg&ct=clnk&gl=bg
I didn't recently speak to a dermatologist about this procedure and don't know the prices, but I think it will be expensive too.The procedure must be done during autumn or winter,here the dermatologists don't have any experience regarding the use of Yag laser for DD,that's also why I hesitate.
I found here Maritime Pine Bark and will try it.Also I start again taking Vit A+E, Fish oil and will include Vit B complex.I continue with 4 Life Transfer Factor,you can check on it,it's not a medication but a supplement, very good for the immune system and recommended for autoimune diseases, what is DD.
I'll see what I can do about the diet,I never have been allergic to food,but regardind DD,I noticed that it gets worse after drinking alcool or eating chocolate,desserts.
About the medications, after using Neotigason,I don't want to hear about any oral retinoids,it was really awful.I can recommend you to use topical creams with antibiotics and corticosteroids ,just in case of inflammation and infection.
Thanks again for the information,hope we'll keep in touch!
Hi Adrianna!My name is Tsvetelina, Eastern Europe.I was diagnosed with Darier's disease 10 years ago,now I'm 29.When I was searching on the web for new information and treatment of DD, I found the site www.skinpatientsalliance.ca and your postings.As I also have the disease, I think and hope that we can exchange information about therapies and treatment of DD and help each other.
Like you, I've seen a lot of dermatologists,most didn't know about DD or know a few.After being diagnosed with DD, I hardly wanted that biopsy was wrong.I even took second biopsy,still the same - Darier's disease.So I had to admit I should live with it and find a treatment wich will work for me.That isn't easy,as you know that for now,there's no total cure of DD, only supporting treatment unfortunately.
With the years I have outbreaks more often,especially when I have my period.I've been taking oral retinoids - Neotigason,but only for 2-3 months because it caused me hard loss of hair.I also used topical retinoids -Retin A,Adapalene also known as Differin ( I still use it,it gives me good results) and others.I also use corticosteroids as cream - Fucicort ,wich also contains antibiotics,and I also have been on injections with corticosteroids,didn't help a lot.I have had procedures of chemical peeling,that also didn't help me a lot.As I didn't find the "right therapy", I keep searching .And I try to stay positive and believe that somehow things will be better.
I also take vitamins and supplements but not regularly.From 2 weeks I'm taking 4 Life Transfer Factor Plus( www.4life.com) and I expect a good result.As I learn in your blog about your Hypoallergic diet ,I'm interested in what exactly it consist(I never made a diet for DD).Also about the vitamins and supplements you're taking,in what doses,and for what periods of time?Now I'm also thinking on the possibility for a surgery with Yag Laser,I read articles that it works on DD and even a complete remission can be achieved.
Hope you'll write me back and we can give a hand on our common problem - Darier's disease.
Best regards,
Tsvetelina
-------------------------------
Hello!
Good to meet you - and I'm sorry that you too have DD. I have posted my dosages on the website but tend to stay away from much detail because I am not a doctor nor a health practitioner - take the vitamins and suupliments to your natural path or health practitioner to get the dosage that is right for your body. Right now I take Vit B1,6,12 complex, Zinc/copper, Vitamin D, A, sometimes C, omegas on occasion when I haven't had fish in that day, probiotics, maritime PINE BARK! is my saviour. It is my miracle pill. Look into it - I couldn't live without it!
I'm having troubles seeing all my posts on skinpatientalliace and have called them recently to figure it out - I'm thinking most of my dosage entries are there. I hope they will figure it out with me soon!
I haven't tried most of the medication you have listed - the side effects scared me off too quickly and so did the prices! The hypoallergenic diet was to find my triggers and you can find the general outline of how to do one over the internet but I strongly suggest seeing someone to support you through it like a homeopath or nutritionist just to make sure you don't get sick eliminating things from your diet. I feel more in control of my body since the detox/diet since now I know how my body reacts to certain foods and can understand a flare up or stomach ache - its really empowering!
I haven't heard about yag laser - please tell me more! It sounds expensive but complete remission would be amazing.
I'm sorry I can't be more helpful but hopefully having a dialogue will help us both! Thank you for the email,
---------------------------------------------
Hi Adrianna!Thank you for your e-mail!
About the Yag laser I'll send you some links to websites,where you can find detailled information:
http://www.asclepion.com/root_corporate/pdf/studies/MCL%20Efficacy%20of%20erbium%20laser%20ablation%20in%20darier%20disease%20and%20hailey-hailey%20disease.pdf
http://webcache.googleusercontent.com/search?q=cache:6eA19evcLAkJ:www.ehow.com/way_5670338_laser-therapy-darier_s-disease.html+laser+therapy+for+darier's+disease&cd=2&hl=bg&ct=clnk&gl=bg
I didn't recently speak to a dermatologist about this procedure and don't know the prices, but I think it will be expensive too.The procedure must be done during autumn or winter,here the dermatologists don't have any experience regarding the use of Yag laser for DD,that's also why I hesitate.
I found here Maritime Pine Bark and will try it.Also I start again taking Vit A+E, Fish oil and will include Vit B complex.I continue with 4 Life Transfer Factor,you can check on it,it's not a medication but a supplement, very good for the immune system and recommended for autoimune diseases, what is DD.
I'll see what I can do about the diet,I never have been allergic to food,but regardind DD,I noticed that it gets worse after drinking alcool or eating chocolate,desserts.
About the medications, after using Neotigason,I don't want to hear about any oral retinoids,it was really awful.I can recommend you to use topical creams with antibiotics and corticosteroids ,just in case of inflammation and infection.
Thanks again for the information,hope we'll keep in touch!
More emails from great people from around the world who also have DD - our thoughts over email shared for your interest:
Hi Adrianna!My name is Tsvetelina, Eastern Europe.I was diagnosed with Darier's disease 10 years ago,now I'm 29.When I was searching on the web for new information and treatment of DD, I found the site www.skinpatientsalliance.ca and your postings.As I also have the disease, I think and hope that we can exchange information about therapies and treatment of DD and help each other.
Like you, I've seen a lot of dermatologists,most didn't know about DD or know a few.After being diagnosed with DD, I hardly wanted that biopsy was wrong.I even took second biopsy,still the same - Darier's disease.So I had to admit I should live with it and find a treatment wich will work for me.That isn't easy,as you know that for now,there's no total cure of DD, only supporting treatment unfortunately.
With the years I have outbreaks more often,especially when I have my period.I've been taking oral retinoids - Neotigason,but only for 2-3 months because it caused me hard loss of hair.I also used topical retinoids -Retin A,Adapalene also known as Differin ( I still use it,it gives me good results) and others.I also use corticosteroids as cream - Fucicort ,wich also contains antibiotics,and I also have been on injections with corticosteroids,didn't help a lot.I have had procedures of chemical peeling,that also didn't help me a lot.As I didn't find the "right therapy", I keep searching .And I try to stay positive and believe that somehow things will be better.
I also take vitamins and supplements but not regularly.From 2 weeks I'm taking 4 Life Transfer Factor Plus( www.4life.com) and I expect a good result.As I learn in your blog about your Hypoallergic diet ,I'm interested in what exactly it consist(I never made a diet for DD).Also about the vitamins and supplements you're taking,in what doses,and for what periods of time?Now I'm also thinking on the possibility for a surgery with Yag Laser,I read articles that it works on DD and even a complete remission can be achieved.
Hope you'll write me back and we can give a hand on our common problem - Darier's disease.
Best regards,
Tsvetelina
-------------------------------
Adrianna
---------------------------------------------
Hi Adrianna!Thank you for your e-mail!
About the Yag laser I'll send you some links to websites,where you can find detailled information:
http://www.asclepion.com/root_corporate/pdf/studies/MCL%20Efficacy%20of%20erbium%20laser%20ablation%20in%20darier%20disease%20and%20hailey-hailey%20disease.pdf
http://webcache.googleusercontent.com/search?q=cache:6eA19evcLAkJ:www.ehow.com/way_5670338_laser-therapy-darier_s-disease.html+laser+therapy+for+darier's+disease&cd=2&hl=bg&ct=clnk&gl=bg
I didn't recently speak to a dermatologist about this procedure and don't know the prices, but I think it will be expensive too.The procedure must be done during autumn or winter,here the dermatologists don't have any experience regarding the use of Yag laser for DD,that's also why I hesitate.
I found here Maritime Pine Bark and will try it.Also I start again taking Vit A+E, Fish oil and will include Vit B complex.I continue with 4 Life Transfer Factor,you can check on it,it's not a medication but a supplement, very good for the immune system and recommended for autoimune diseases, what is DD.
I'll see what I can do about the diet,I never have been allergic to food,but regardind DD,I noticed that it gets worse after drinking alcool or eating chocolate,desserts.
About the medications, after using Neotigason,I don't want to hear about any oral retinoids,it was really awful.I can recommend you to use topical creams with antibiotics and corticosteroids ,just in case of inflammation and infection.
Thanks again for the information,hope we'll keep in touch!
Hi Adrianna!My name is Tsvetelina, Eastern Europe.I was diagnosed with Darier's disease 10 years ago,now I'm 29.When I was searching on the web for new information and treatment of DD, I found the site www.skinpatientsalliance.ca and your postings.As I also have the disease, I think and hope that we can exchange information about therapies and treatment of DD and help each other.
Like you, I've seen a lot of dermatologists,most didn't know about DD or know a few.After being diagnosed with DD, I hardly wanted that biopsy was wrong.I even took second biopsy,still the same - Darier's disease.So I had to admit I should live with it and find a treatment wich will work for me.That isn't easy,as you know that for now,there's no total cure of DD, only supporting treatment unfortunately.
With the years I have outbreaks more often,especially when I have my period.I've been taking oral retinoids - Neotigason,but only for 2-3 months because it caused me hard loss of hair.I also used topical retinoids -Retin A,Adapalene also known as Differin ( I still use it,it gives me good results) and others.I also use corticosteroids as cream - Fucicort ,wich also contains antibiotics,and I also have been on injections with corticosteroids,didn't help a lot.I have had procedures of chemical peeling,that also didn't help me a lot.As I didn't find the "right therapy", I keep searching .And I try to stay positive and believe that somehow things will be better.
I also take vitamins and supplements but not regularly.From 2 weeks I'm taking 4 Life Transfer Factor Plus( www.4life.com) and I expect a good result.As I learn in your blog about your Hypoallergic diet ,I'm interested in what exactly it consist(I never made a diet for DD).Also about the vitamins and supplements you're taking,in what doses,and for what periods of time?Now I'm also thinking on the possibility for a surgery with Yag Laser,I read articles that it works on DD and even a complete remission can be achieved.
Hope you'll write me back and we can give a hand on our common problem - Darier's disease.
Best regards,
Tsvetelina
-------------------------------
Hello!
Good to meet you - and I'm sorry that you too have DD. I have posted my dosages on the website but tend to stay away from much detail because I am not a doctor nor a health practitioner - take the vitamins and suupliments to your natural path or health practitioner to get the dosage that is right for your body. Right now I take Vit B1,6,12 complex, Zinc/copper, Vitamin D, A, sometimes C, omegas on occasion when I haven't had fish in that day, probiotics, maritime PINE BARK! is my saviour. It is my miracle pill. Look into it - I couldn't live without it!
I'm having troubles seeing all my posts on skinpatientalliace and have called them recently to figure it out - I'm thinking most of my dosage entries are there. I hope they will figure it out with me soon!
I haven't tried most of the medication you have listed - the side effects scared me off too quickly and so did the prices! The hypoallergenic diet was to find my triggers and you can find the general outline of how to do one over the internet but I strongly suggest seeing someone to support you through it like a homeopath or nutritionist just to make sure you don't get sick eliminating things from your diet. I feel more in control of my body since the detox/diet since now I know how my body reacts to certain foods and can understand a flare up or stomach ache - its really empowering!
I haven't heard about yag laser - please tell me more! It sounds expensive but complete remission would be amazing.
I'm sorry I can't be more helpful but hopefully having a dialogue will help us both! Thank you for the email,
---------------------------------------------
Hi Adrianna!Thank you for your e-mail!
About the Yag laser I'll send you some links to websites,where you can find detailled information:
http://www.asclepion.com/root_corporate/pdf/studies/MCL%20Efficacy%20of%20erbium%20laser%20ablation%20in%20darier%20disease%20and%20hailey-hailey%20disease.pdf
http://webcache.googleusercontent.com/search?q=cache:6eA19evcLAkJ:www.ehow.com/way_5670338_laser-therapy-darier_s-disease.html+laser+therapy+for+darier's+disease&cd=2&hl=bg&ct=clnk&gl=bg
I didn't recently speak to a dermatologist about this procedure and don't know the prices, but I think it will be expensive too.The procedure must be done during autumn or winter,here the dermatologists don't have any experience regarding the use of Yag laser for DD,that's also why I hesitate.
I found here Maritime Pine Bark and will try it.Also I start again taking Vit A+E, Fish oil and will include Vit B complex.I continue with 4 Life Transfer Factor,you can check on it,it's not a medication but a supplement, very good for the immune system and recommended for autoimune diseases, what is DD.
I'll see what I can do about the diet,I never have been allergic to food,but regardind DD,I noticed that it gets worse after drinking alcool or eating chocolate,desserts.
About the medications, after using Neotigason,I don't want to hear about any oral retinoids,it was really awful.I can recommend you to use topical creams with antibiotics and corticosteroids ,just in case of inflammation and infection.
Thanks again for the information,hope we'll keep in touch!
Monday, 4 October 2010
I have had some lovely people contact me over the internet regarding DD and I asked Nicole to share our emails so that what we were talking about may come out and perhaps help others with their understanding of DD.
Here are our emails unedited:
Hello :)
I find that some of these are too harsh for my system to take every day. Through trial and error I have found out that Vit E makes me break out - so why take it? I find that I eat a lot of fish so I don't need to take Omegas every day. Zinc is very heavy and hard to ingest so I don't have it everyday. Calcium makes me have white spots/calcium deposits in my skin if I take it too often. Vit C makes me nauseated if I take too much and I only take Vit A at night if I have taken Zinc as it helps to ingest it. Probiotics I am taking more frequently because I found a brand (the same as the Pine Bark actually) that doesn't go through my system like a laxative (hey you asked!)
Also there is the money issue - some of these things are expensive and they all add up - I'm a Canadian stage actor that isn't a well known - I don't have a medical plan and most of these wouldn't be supported anyway. So I have to make that call health vs wealth. Its a sad choice but true. This is why I haven't tried the Co q10 Enzymes - thankfully my list seems to work for me right now so its ok. If I find that my body changes over the years and finds this regime ineffective then I will try a new combo :)
Yoga, pilates, reiki, exercise and meditation also helps - its about relaxing your system as the Dariers is a reaction to stress on your body whether it be a tangible thing like food and medication or work load or any other stress - At least this is what I have found. My main food trigger is sugar - it stresses my system so I can't have too much of it in one sitting.
I hope this helps - I'm going to post this on my blog since it was a great question!
-------------------------------------------------------------------------
Nicole to Adrianna Oct 3 2010
Here are our emails unedited:
Hello again Adrianna
quick question - I noticed that you alternate supplements
the latest I read was
b6 b12 - 100 mg. daily
vita D - 1000 IU daily
pine bark extract - 30 mg. daily
every other day
zinc 15 mg.
omega ( I am using borage oil and salmon oil) - do you have other favorites
calcium (how much)
vitamin C ( how much)
probiotics - ( I am going to try "Bio - K") do you have other favorites. as I too can't have yogurt- dairy
Why alternating some supplements? and other's daily?
Thanks so much, I hope I'm not being to pesky with my emails.
PS- how is the acting going? I would never have the guts.
Keep smiling,
Nicole
Aug 24
| 2010 |
I find that some of these are too harsh for my system to take every day. Through trial and error I have found out that Vit E makes me break out - so why take it? I find that I eat a lot of fish so I don't need to take Omegas every day. Zinc is very heavy and hard to ingest so I don't have it everyday. Calcium makes me have white spots/calcium deposits in my skin if I take it too often. Vit C makes me nauseated if I take too much and I only take Vit A at night if I have taken Zinc as it helps to ingest it. Probiotics I am taking more frequently because I found a brand (the same as the Pine Bark actually) that doesn't go through my system like a laxative (hey you asked!)
Also there is the money issue - some of these things are expensive and they all add up - I'm a Canadian stage actor that isn't a well known - I don't have a medical plan and most of these wouldn't be supported anyway. So I have to make that call health vs wealth. Its a sad choice but true. This is why I haven't tried the Co q10 Enzymes - thankfully my list seems to work for me right now so its ok. If I find that my body changes over the years and finds this regime ineffective then I will try a new combo :)
Yoga, pilates, reiki, exercise and meditation also helps - its about relaxing your system as the Dariers is a reaction to stress on your body whether it be a tangible thing like food and medication or work load or any other stress - At least this is what I have found. My main food trigger is sugar - it stresses my system so I can't have too much of it in one sitting.
I hope this helps - I'm going to post this on my blog since it was a great question!
-------------------------------------------------------------------------
Nicole to Adrianna Oct 3 2010
yes, of course. :) The supplements do seem to be helping - I still have a bit of rash, but it is much less itchy. I've also incorporated Spirulina ("NOW" brand is great) into my supplements regimen. I did sneak some sugar - okay a lot of sugar and I paid for it later. I'm also trying gluten free. I tried gluten free (no wheat, rye, etc) for about six weeks and figured it wasn't making any difference and so I had my favorite wheat cereal and the itching was much worse for about 3 days after. You mentioned some foods on your blog and I find that foods do really make such a big difference. Thanks for your blog. Seeing you be so proactive about this disease has really made me even more invested and hopeful in my research.
ttfn :)
Nicole
I have had some lovely people contact me over the internet regarding DD and I asked Nicole to share our emails so that what we were talking about may come out and perhaps help others with their understanding of DD.
Here are our emails unedited:
Hello :)
I find that some of these are too harsh for my system to take every day. Through trial and error I have found out that Vit E makes me break out - so why take it? I find that I eat a lot of fish so I don't need to take Omegas every day. Zinc is very heavy and hard to ingest so I don't have it everyday. Calcium makes me have white spots/calcium deposits in my skin if I take it too often. Vit C makes me nauseated if I take too much and I only take Vit A at night if I have taken Zinc as it helps to ingest it. Probiotics I am taking more frequently because I found a brand (the same as the Pine Bark actually) that doesn't go through my system like a laxative (hey you asked!)
Also there is the money issue - some of these things are expensive and they all add up - I'm a Canadian stage actor that isn't a well known - I don't have a medical plan and most of these wouldn't be supported anyway. So I have to make that call health vs wealth. Its a sad choice but true. This is why I haven't tried the Co q10 Enzymes - thankfully my list seems to work for me right now so its ok. If I find that my body changes over the years and finds this regime ineffective then I will try a new combo :)
Yoga, pilates, reiki, exercise and meditation also helps - its about relaxing your system as the Dariers is a reaction to stress on your body whether it be a tangible thing like food and medication or work load or any other stress - At least this is what I have found. My main food trigger is sugar - it stresses my system so I can't have too much of it in one sitting.
I hope this helps - I'm going to post this on my blog since it was a great question!
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Nicole to Adrianna Oct 3 2010
Here are our emails unedited:
Hello again Adrianna
quick question - I noticed that you alternate supplements
the latest I read was
b6 b12 - 100 mg. daily
vita D - 1000 IU daily
pine bark extract - 30 mg. daily
every other day
zinc 15 mg.
omega ( I am using borage oil and salmon oil) - do you have other favorites
calcium (how much)
vitamin C ( how much)
probiotics - ( I am going to try "Bio - K") do you have other favorites. as I too can't have yogurt- dairy
Why alternating some supplements? and other's daily?
Thanks so much, I hope I'm not being to pesky with my emails.
PS- how is the acting going? I would never have the guts.
Keep smiling,
Nicole
Aug 24
| 2010 |
I find that some of these are too harsh for my system to take every day. Through trial and error I have found out that Vit E makes me break out - so why take it? I find that I eat a lot of fish so I don't need to take Omegas every day. Zinc is very heavy and hard to ingest so I don't have it everyday. Calcium makes me have white spots/calcium deposits in my skin if I take it too often. Vit C makes me nauseated if I take too much and I only take Vit A at night if I have taken Zinc as it helps to ingest it. Probiotics I am taking more frequently because I found a brand (the same as the Pine Bark actually) that doesn't go through my system like a laxative (hey you asked!)
Also there is the money issue - some of these things are expensive and they all add up - I'm a Canadian stage actor that isn't a well known - I don't have a medical plan and most of these wouldn't be supported anyway. So I have to make that call health vs wealth. Its a sad choice but true. This is why I haven't tried the Co q10 Enzymes - thankfully my list seems to work for me right now so its ok. If I find that my body changes over the years and finds this regime ineffective then I will try a new combo :)
Yoga, pilates, reiki, exercise and meditation also helps - its about relaxing your system as the Dariers is a reaction to stress on your body whether it be a tangible thing like food and medication or work load or any other stress - At least this is what I have found. My main food trigger is sugar - it stresses my system so I can't have too much of it in one sitting.
I hope this helps - I'm going to post this on my blog since it was a great question!
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Nicole to Adrianna Oct 3 2010
yes, of course. :) The supplements do seem to be helping - I still have a bit of rash, but it is much less itchy. I've also incorporated Spirulina ("NOW" brand is great) into my supplements regimen. I did sneak some sugar - okay a lot of sugar and I paid for it later. I'm also trying gluten free. I tried gluten free (no wheat, rye, etc) for about six weeks and figured it wasn't making any difference and so I had my favorite wheat cereal and the itching was much worse for about 3 days after. You mentioned some foods on your blog and I find that foods do really make such a big difference. Thanks for your blog. Seeing you be so proactive about this disease has really made me even more invested and hopeful in my research.
ttfn :)
Nicole
Saturday, 2 October 2010
I used to belong to a website called skinpatientalliance.ca but it shut down so I couldn't get to my posts or reply or anything... So here is my own blog to help raise awareness of Darier's White Disorder or Dariers Disease or DD.
I have it. I'm living with it. And I'm owning it. Here's how I did it starting with the blog I had started back in 2009 - this will be one huge post but after this I hope to keep up the conversation here and at the new skin site called www.skinergy.ca where I am now logged on as Adrianna P
I didn't edit this - It has all the comments rolled into it that I received from posting my "blog" on their site.
Enjoy and hope to hear from you!
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Forum Post:
Darier's DiseaseView Edit Outline
I have posted in the "share your story" how I came to know what my disease is: Darier's Disease http://dermnetnz.org/scaly/darier.html
And now I wanted to start a discussion/blog on what I have been doing to try and live with it and try to "make it go away".
After being paraded around in front of 30 or so dermatologists this rare disease is not getting the time and effort I thought it should. I was given Retin A cream and to stay out of the sun. Not that much to go on and of course, nothing really changed.
I went to see a Natural Path at this clinic: http://www.ccnm.edu/?q=robert_schad_naturopathic_clinic and instatly felt I had found a place where I was being treated as a human rather than just some neat disease that no ones really heard of. True, they didn't know it either - but their enthusiasm and excitment (which was hilarious I will admit) at what the possibilities were to cure and aid me in my fight was what I wanted to see from a working group of professionals.
They started me on:
B6 complex 1x 250mg/day
Fish Oil 1 tsp/day
Probiotics
Vitamin D 500 mg/day
A hypoallergetic diet
because I have been on and off antibiotics most my life from ulcers, we believe I also suffer from a Candida Albicans imbalance. This is why the probiotics and fish oil, but a strong immune and GI helps everything in your body - this is their reasoning. I also have been lactose intolerant since I was about 21 (now 26) and more and more food allergies are cropping up - so this also is to aid my growing sensitivities to foods.
The fact that it seems that the Darier's is affected by hormonal changes (it is written that a woman's cycle can make the rash more intense at certain times) is why the B6.
My team of naturopaths have taken all the info from my consultation and will follow up with me with what they find about Darier's - my lead Doctor there said this was "exciting!" and when I grimaced he said "oh not for you - but think, this is a learning facility too - everyone will want to work on it!" that made me happy!
I will return with updates, and please if you too are going through Darier's disease please post about your findings as this disease is eluding every health practitioner I encounter!!
General Discussion Ontario
Kudos for this blog post. You constantly publish a intriguing blog. I will return in future.
breville 800jexl
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Darier's
mary lou
I tried to post last week for the first time but it did not work, so I will try again. I am a 53 year old female and I was diagnoised with Darier's at the age of 15. On a scale of one to ten with ten being the worst I am a solid three. I have been to many doctor's and specialists and have tried all medications. (Accutane, Soriatane, creams, steriods, etc.) Soriatane has been the only thing that works for me. Last year I started reading the comments on this forum. Adrianna's postings were very interesting to me and so I tried her supplement suggestions and have had some good results so far. I have emailed her and she is always a good source of information and positive support.
I met with the head of Dermtology at Duke University and he was able to explain and discuss many issues with Darier's Disease. He told me that researchers have found the defective chromosone that causes the body to not be able to process the skin cells properly with Darier's and he also stated that the calcium pump in the body is also defective. I asked if we take more calcium will it help and he stated no. If you type in calcium pump and Darier's disease it will pull up information on this. He let me know that a cure for Darier's is a long way off. There are many other disease's that cause death in large numbers and most if not all patient's with Darier's live a normal life span. His hope is that research in other cures for higher priority disease's will lead to help with Darier's.
Along with Adrianna, I use Aveeno products and they are a god send. I also only use Cetaphil soap and take very short, warm showers. I wear mostly cotton clothing and use detergent that is free of all dyes and perfumes. I am carefull in the sun even though winter is my worst time. Stress is a major factor in dealing with this disease. Sometimes I think it is what others think and the questions they ask that makes us so stressed. The calmer I am the milder my breakouts are. As I reach menopause the breakouts happen less often, must be due to harmones.
I have been married for 30 years to a wonderful, understanding man and have two grown children who at the ages of 26, and 27 show no signs of Darier's. There are days when I want to pull the covers over my head when I am having a break out, but most of the time I live life to the fullest and just try to stay positive. As I told Adrianna, knowledge is power and the more we share information about Darier's the more we can help ourselves and hopefully others.
Thanks for letting an "Old Lady" vent!
Mary Lou
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Interesting post - thanks.
Interesting post - thanks. You always write a interesting article. Thanks!
hoover steamvac
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Hair Transplants India
Ya definitely this is great post.now a days various types of disease are happening,such as hair loss and other skin related problems. Hair Transplants India is a place where hair falling and skin related problems solved by various surgeons so if you are suffering from hair falling and baldness than go for hair transplants on that center.
HARRY
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Im not quite familiar with
Im not quite familiar with that disease. But its a good thing you've shared your experience. Thank you Get well soon
convection microwave
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look down, I posted twice
look down, I posted twice and there is no delete option!
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Its been a couple weeks...March 24
My follow up with the naturopath was mostly a physical check up - next time they will do blood and urine samples. They checked everything from thyroid, liver, kidney tenderness.
Then the phone rang: my pap came back for the 2nd time in 6 months as ASCUS. So I have that on my plate as well. For this they prescribed a caster oil pack, cod liver oil, estrogen lessening foods such as broccoli, cauliflower, dark leafy greens and brussel sprouts.
I have been on a hypoallergetic diet and am now reintroducing soy products (being lactose intolerant I need need need soy!)
I also just started reintroducing 500 mg of vitamin C and 1 capsule of high potency fish oil. And I am still doing 500 mg of B6, 500 mg of Vit D, and probiotics twice a day.
My retin-A cream ran out - and for 50$ a tube I am trying pure vitamin A capsules broken onto my skin and massaged. I will do this for one week and see if it gets worse/better. It has lessened in scaly-ness and less red bumps and the open sores have been gone for a couple weeks now. Its itchy a lot more too. I have flakey dry skin that needs exfoliating even though it still is tender.
A friend commented that her skin gets very much like mine when shes around wool - particularly scarves. Seeing as this comes around winter time aka when I start wearing scarves, I am going to see if taking wool out of the equation also lessens my neck rash. It is, and always has been only on my neck.
Will report on the vitamin a substitute
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April 8 2009 update
So this was my 3rd visit to the naturopath and this time I noted the following to them:
Vit A capsules broken onto skin doesn't do much at all except lubricate without stinging
My Vaseline Intensive Care Vit A & E are now burning when I put it on
My rask/bumps are moving down my neck past collar bones to my chest in a polo shirt V neck pattern. As well the left side of my face is now red and has minor bumps.
I re-started the retin-A cream for the past week and a bit and it is not taking away anything just yet. It is flaky and sensitive from this cream.
Naturopath said:
Vit A 1,000 IU daily is fine up to 10,000 IU for a shirt period of time should I need
Fish oil every day (I was rotating)
Vitamin C everyday 250 NOT CHEWABLE because chewable gave me cankers in my mouth!
Continue with B6 and Vitamin D daily with probiotics at meals.
Added: Zinc and Copper 1/day - as these both help heal damaged skin
peppermint oil should I need it for my stomache and bowl
Aveeno anti itch cream for use instead of polysporin
Watch: cashews and mangos - they are a part of the poison ivy family and I am already sensitive to mangos.
Taken away: Soy, I reintroduced it and viola, more rash? could it be the soy - I will test it. It was in my diet for 2 weeks and the past 3 days the bumps just keep coming. Only on my neck and chest though. **About 5 days ago 5 or so bumps on my ribs/midriff appeared - used retin A and polysporin and they died off...**
Think about: B12 injections as they can be very good for skin disorders and relaxing the body. it would be 11$/shot/wk
Also the ASCUS turned into a colponoscopy - which in turn saw nothing abnormal in my cervix - she thinks - and a BIG THINK - nothing definitive; that if my darier's is a skin disorder then it may be affecting skin cells throughout my body including the lining of my cervix.
I have started to take photos of my rash to try and log the changes. I do so at least once a week but I may do it more.
And finally I have asked for my fathers medical history and diagnosis of his psoriasis - if he had a biopsy or not as this disorder is autosomal - meaning it goes from generation to generation never skipping a line - so one of my parents has to have it or its not darier's - so I'm looking for a lineage of this disease in my family now.
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June 22 2009 Update
So I went to the Dermatologist for a biopsy with my dad - as he has Psoriasis so naturally I would have to assume he is the genetic link to my disease. the Dermatologist laughed and said "no he doesn't need a biopsy - you have the disease - he didn't give it to you! Your body made it for itself!"
WHAT?! Why would it do that?!
My brain has to theorize this: if my mom has moles, my dad has psoriasis then I have the genetic mix match of this and my body made a decision to go neither way but make up a new path = darier's white disorder?! GREAT.
So my dad was feeling much better but I was feeling lousy. The Dermo was explaining my brothers will most likely not have it. But we won't know until they are in their late twenties or early thirties. Just like me. But my kids, should I have any, will have a 50% chance of contracting this disorder. Great.
Since my last post I have had a really good reaction to the Zinc/copper. So much so that my Natural Path wants me to take it twice a day. I don't know if I can do that - its a mineral and its harsh! you have to take it with lots of food and even then I sometimes throw up. But my skin is looking much better with it. that and the fish oil is great. I sometimes take a vitamin A 10,000 IU at bed time (all with my cream from the Dermo: Retin A) and I like what I am seeing.
You can go here to see my skin results: http://www.flickr.com/photos/adriannap/sets/72157620223217212
I try to take some pictures every now and again to show myself I am in fact improving as its depressing to wake up everyday to it as I'm sure we all hate that skin regime to get out of the house...
I have also found that soy is not good for my skin nor my body in any large amounts. And white wine is going under the microscope as I had some at a party twice now and my skin freaked after both occasions - but I was at a party eating various things that perhaps I shouldn't... but the common factor was white wine. Red doesn't seem to affect it but that too will be looked at.
I haven't explored the B12 injections due to finances - but I'm still interested... Aveeno is my sanity! It doesn't sting - it is my cleanser, my body wash, my face scrub and soon to be my sunscreen - I LOVE IT! For anyone with a sensitivity this is for you!!
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July 10 2009
New pictures are up -
Since I'm now also working at the Tea Shop around the corner I have been reading up on tea and healing properties... I'm drinking a maple tea: http://www.davidstea.com/organic-maple.html which has zinc in it to help my skin and immunity. Also I have been trying this one: http://www.davidstea.com/night-out.html which has Vitamin A and olive leaf in it. Plus giving this a try for my all around health instead of coffee: http://www.davidstea.com/coffee-pu-erh.html it is akin to probiotics in a natural state - its a good cleaner of your innards and I know I need that!
talking to customers I happened to meet "Nadia" a pharmacist who got to talking to me because there was a book on the tea shop wall saying "Foods that Fight Cancer" which she scoffed at and we got to talking about how everything is connected: mind and body - what you eat and everything in between. She said I need to check out http://www.pycnogenol.com/flash/ at 50 mg once a day, http://en.wikipedia.org/wiki/Coenzyme_Q10 100 mg per day, and Omega 3's at 100 mgs twice a day.
I will look into those - and keep drinking tea! because I'm addicted already to tea so why not ones built to help me?
Still haven't braved the B12 injections...
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August 2009
If I had one thing to say it would be:
THANK YOU NADIA THE PHARMACIST! Since using Pine Bark extract or Pyncegol my rashes have all but gone away!!
I was scared because I had a vacation in LA and I didn't want to show off my lovely rash but I barely used make up and by introducing it into my cocktail of supplements I really think I have caught on to something really great for my skin!
I checked out the Encyclopedia of Nutrtional Supplements http://www.amazon.com/Encyclopedia-Nutritional-Supplements-Essential-Imp... and read up on what exactly is happening in my body that makes this a wonder drug...
turns out that the pine bark extract is a flavonoid - a PCO (procyanidolic oligomers) which means its a huge antioxidant and free-radical and works to deplete the destruction of collagen which is the support structure of skin and blood vessels in the body. Its antioxidant rate is 50x that of Vit A and E! So get out there and pick this up! either Grape Seed extract or Maritime Pine Bark - pyncegol has been branded so just look for what ever brand you trust and try these antioxidants. And research for yourself - flavonoids are what people rave about when they say Green Tea is so good for you - so look it up, its worth it!
I also found this interesting in the Encyclopedia & A-Z Guide to Drug-Herb-Vitamin Interactions....
While reading about my topical cream Retin-A :
"Severe cystic acne and disorders of KERATINIZATION, such as Darier's disease... or hyperkeratosis" it listed Darier's!! In a widely publicized book. Wow. That's a first. It says that zinc is an agent for Vit A to be absorbed, as well as Vit E. So my Vit A or Retin-A cream will work better with my body if I take my Zinc Copper balance - in other words I can't skimp out on the zinc :( I was looking for things to cut in my cocktail of supplements but it looks like the new mix is here to stay - with the pine bark! Also the PCO has no drug interactions! It truly is a miracle supplement!!
I find the pine bark can be taken whenever - with a glass of water or with food, and no where does it say that its a bad choice either way. Mean while Zinc will make me sick to my stomach and has made me dash to the lou if I don't eat enough. So beware.
Lessons learned:
Protein and zinc are necessary for retinal mobilization
Vit A needs zinc and/or vit E to work properly
pine bark is awesome. I'm taking 50 mg/day mid day - it says I can up it to 150-300 for therapy (which I have come to know as short periods of time) **I will have to talk to my natural path about this one...
Eat more dried apricots, chili peppers, kale and sweet potatoes, cherries and paprika - so says it for skin disorders
Read up on more Flavonoids like Quercetin as its an anti-inflammatory... it can be found in fried onions (yum!)
Look into introducing CoQ10 and Vit E
On a side note - I have purchased this awesome cookbook: http://www.amazon.com/Baking-Agave-Nectar-Ultimate-Sweetener/dp/15876132... because I find sugar makes my rash appear more pronounced (and it gives me headaches...)
**be warned - agave makes your intestines move and shake and you can't have too much at one time so I would recommend splitting the agave needs with buckwheat honey which was also recommended to me by "Nadia"
best wishes and let me know if you find anything fantastic!
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Nov 2009
It has been a whole year since I started this journey to find out what was wrong with my skin and later find out I was diagnosed with Darier's Disorder.
I can thankfully say I have a therapy that works for me and my skin is mostly clear of any signs of the disorder. Yes, I get flare ups when I'm eating improperly, overly stressed, or its that wonderful time of the month (eep!) but really day to day life is no longer filled with tears or rashes that ache.
I want to take a moment to thank everyone - who I have met along the way that offered support either in hugs or medicine, treatment or just a shoulder to cry on. Also to those I have not met or met yet that I hope this blog speaks to you and allows you to seek out treatments that work for you.
I have met several people living with Darier's from this blog and I hope to continue to do so - not that I like hearing you too may be afflicted but that we can be a community for eachother and keep ourselves informed and also encourage eachother to help ourselves find a way of life suitable to our own needs especially when faced with a genetic disorder.
Thanks again everyone.
Nothing new to report other than I'm in a play (yes I'm acting again thanks to skin that will again allow make up artists near it!) and I have slowly gaining my momentum and confidence that was dashed one year ago. *insert big smile here*
What I'm taking now:
b12 b6 100 mg each day
vit d 1000 ui each day
Maritime Pine Bark Extract each day 30 mg
Alternating:
zinc/copper 15 mg
omega
vit c 50 mg
Calcium supplement
probiotics
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Darier's Disease
I posted information on General Discussion maybe you would like to refer to it.My email address is sandy.b1@hotmail.com Look forward to hearing from you and we can compare our treatments with each other.Take care Best regards Sandy
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I too have Darier's Disease
I too have Darier's Disease and I am going through an outbreak at the moment which is my worse yet. I am 36 years old, had my first symptoms at age 13 but diagnosed at 22. From your pics, the pattern of mine is almost identical to yours and those pics could easily have been of me. I would like to email you rather than talk over the forum. I have tried so many lotions, creams, pills- we could compare notes. If you would like, I would email you. Thanks.
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of course!
you can email me at adriannasemail @ gmail . com
hope to hear from you! and I'm posting some great stuff I have learned right after I click send on this!
all the best,
Adri
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December 2009
A new photo is up on my flickr: http://www.flickr.com/photos/adriannap/4192307445/
Still in the clear! I do have occasional bumps but no rash like I had last year. I remember it being painful to wear anything with a collar - but that I wanted to so I could hide the rash :( This year is different! And I hope it is with you too!
I keep getting emails - and I love it! I am so thankful to be able to pay it forward! If you have Darier's the best advice I can give is keep trying - keep reaching out for more answers because it is such a little known disorder and doctors can get flustered by the lack of documented cases. I also suggest taking down your stress levels as stress will only make you flare up. I know I know, it's the motto for life right? Destress. But yoga, a good book, a comedic movie, a healthy dinner - anything that makes you destress or puts you in a relaxing mood will help! So around this time of year it may be that the bumps flare up because we are eating overly sugary foods or that we haven't done our xmas shopping yet - all stress. At the end of each day allow yourself to be relax. "Leave it at the door" as many directors say; it won't be there tomorrow so let it go.
Now I sound like a guru or something. I hope you can take from this blog what you will. It was also a way for me to destress. A way to let me let go of my frustration with my skin.
So Happy Holidays and here is to a rash free New Year!
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January Winter Blues
I have started having email conversations with some of you lovely people who have read my blogs over the past year. A Mary Lou writes that she has intel about calcium and Darier`s. I hope she can log in soon to talk about it as I think I need more information about it before I blog about the correlation. But I am intrigued as I have always had a strong reaction to too much calcium in my system - to the point I get zit-like peaks in my skin especially on my face (gee where did my Dariers first appear?) and they slowly disappear. I cant attack them like popping a zit or wash my face enough, and it is definitely around calcium as I have logged it in my books. That and Vit. C I don`t get along great with but I must take supplements because I dont eat/drink enough of them.
My back has now been a canvas for Darier`s - no picture as its hard to photo your own back! But it was a light inflammation due to what I can only conclude is from a holiday season of sugary foods, too much alcohol (which is terrible for my Darier`s as there is dehydration and sugar jammed into a lil wine glass) and such stress dealing with family and recent events.
I also started taking my clear skin for granted and lessened my regime of pills. I am back on Pine Bark everyday and B, D, alternate C, Omegas occasional, and Vit A - which ran out in December and I just shrugged about it. Mistakes were made. I am just thankful it wasn`t my face and neck that blew out of control.
So I`m back to yoga and exercise. Water and supplements daily. I also still enjoy tea - but for every cup of tea I have a cup of water as it can sneak away hydration from you and caffeine is a fiend as well.
So yes - the moral is - DO NOT fall under the spell that your disorder is just going away. It is not. Stay on top of your own health and take care. It is work. But the reward is totally worth it!
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March 1 2010
Like I didn't already know but: I have had a relapse of symptoms but its funny how I can pin point where it stems from since I have had such a good study of myself and all the effects "things" have on me...
I drank white wine in abundance at a friends dinner party. I have forgotten to renew my supply of pine bark for 5 days (life got busy!), because life is busy = more stress, I ate butter by accident (thanks restaurant that lied to me) and my digestive system has been stressed because of it.
All these things led to me getting a break out on my chest and back. Interesting how it didn't reappear on my neck. Though I have be noticing if something is scratchy or its too dry my skin goes red very quickly and stays red with bumps. I would say more so than most. It is the winter time when its much dryer and the cold winds don't help - as Mary Lou was saying above - Winter is my worst time of year.
The lesson learned: don't skimp out on Pine Bark or whatever works for you. AND remember that everything is connected so do yoga or meditate or watch a funny movie - stress is a major factor in this game.
Hope you are all doing well ~ until next time!
Adrianna
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Pine Bark
Adrianna,
I have tried this for almost 7 days and i have notice a small improvment in the rash on my neck and the rest of my bosy seems to itch alot less, I found an over the counter cream with pine bark extract in it, it was 26.00 us dollars so i didn't buy it but my mother surprised me with it today, i will post my results after a weeks use. I have found your blog very helpful and it gives me renewed hope. Thank You for saring.
Cindy
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mary lou Hello, My surgery
mary lou
Hello,
My surgery went really well and it had some interesting results for Darier's. They put me on mega doses of vitamins two weeks before the surgery and they contained B6, B12 and the usual D,A,E,etc. Granted it was in high doses but what a difference it made in my skin. The surgery also included lasers and to my surprise the Darier's is now not visable in those areas as it was before. I am going to wait to pass judgement on if the laser was the reason. I am staying on a lower dose of the vitamins to see if they continue to help. They come in a pack distributed by doctors, it is called Vitasurge. My skin has never looked better. I am also using a line of skin products called Revision. The doctor recomended them and they are so far great. But as we all know time will tell. I am still using Aveeno as my daily lotion. I take short warm showers and immediatly put the Aveeno (oat essense) lotion on all over. If I do that everyday without fail things are much improved. Like you say, you have to manage it everyday without fail. Can't wait till summer!
Mary Lou
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SO good to hear that your
SO good to hear that your surgery went well AND that you had some bonus side effects! I find that the high doses do well for my skin too - I still have to see a Natural Path to see if this will hinder me in the long run though... Have you talked to a sustainable amount for skin therapy?
I have never heard of Revision or Vitasurge but thank you for letting us know ~ I will look into them for sure: taking individual doses can be really annoying at times but the results are worth it...but if there is a compact version of what I take daily...
I found the note the "Nadia" lady gave me with the dosages she recommended that finally led to my remission of sorts - I am nervous to call her and tell her that she is in fact my own personal goddess! I'm thinking of giving her flowers or something. What would be better is if this site hosts a get together in TO I would love to call her and have her speak about what she has learned as a pharmacist. She is obviously very skilled.
Thanks for sharing and I hope to hear more great news from you and everyone else!
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mary lou Hello, I hope this
mary lou
Hello,
I hope this finds you feeling well. The weather has turned warm and I am so glad for that. Still doing well from the surgery. I am still taking the vitamins and using the products that the doctor recommened with good results. I would love to have Nadia at least correspond with us. I am not sure if that is allowed by her company due to regulations (malpractice). As I have said before knowledge is power. The name of the vitamins is VITAMEDICA, I had it wrong on previous post. I do believe the relationship between laser use and Darier's clearing is there but would like to see more research information from doctor's. I hope we all have a free and clear summer!
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Happy sunshine in a sun hat to you too!
I just looked up that line of vitamins: VITAMEDICA; http://vitamedica.com/ is it the Healthy Skin line he recommended? It looks interesting and promising if you are having good results!
I just had a lovely letter from Maria and through our correspondence I turned this up:
http://www.tomsofmaine.com/products/deodorant#/?page=Deodorant it's a deodorant that my friend swears by and could be good for sensitive skin such as ours. I have yet to try it as I'm still ok with Ivory's "sensitive" skin line for under my arms.
Also a reminder that if you are in Ontario you can always call Telehealth 1-866-797-0000 TTY : 1-866-797-0007 (now they will probably be mind boggled by our story of Darier's!) but you can talk about mixing pills/vitamins/supplements and how to deal with the sun effectively in your own way. What works for me may not work for you! So keep talking and asking questions until you find your answer.
I also saw an ad for this: a sunblock spf 100!! http://www.helioplex360.neutrogena.com/?utm_source=n_com&utm_medium=refe...
(theres even a click link for a coupon) I think I may try it - I have to buy some anyway - though I do like Aveeno's spray 45 or 60.
with a follow up from Oprah ;) http://www.oprah.com/health/The-Benefits-of-SPF-100
And don't be lazy! I have been drinking summer patio drinks already and the sugar is taking it out on my skin - and buy some new sun hats, there are some great ones at Winners right now in Canada - now I have 5 :) My fav is now a huge tan and white floppy that extends to my shoulders! What's your favourite?
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Calcium
mary lou
Hello,
I hope the summer is off to a good start! I had a bone density test last week and it showed signs of pre stages of osteoporosis. My doctor started me on calcium and much to my displeasure it has caused my Darier's to flare a little. Has anyone else had this experience? I am seeing her in two weeks and have stopped taking it to see if the flare up goes away. I was doing so well up until that point. Oh well so the journey continues!
Mary Lou
I have it. I'm living with it. And I'm owning it. Here's how I did it starting with the blog I had started back in 2009 - this will be one huge post but after this I hope to keep up the conversation here and at the new skin site called www.skinergy.ca where I am now logged on as Adrianna P
I didn't edit this - It has all the comments rolled into it that I received from posting my "blog" on their site.
Enjoy and hope to hear from you!
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Forum Post:
Darier's DiseaseView Edit Outline
I have posted in the "share your story" how I came to know what my disease is: Darier's Disease http://dermnetnz.org/scaly/darier.html
And now I wanted to start a discussion/blog on what I have been doing to try and live with it and try to "make it go away".
After being paraded around in front of 30 or so dermatologists this rare disease is not getting the time and effort I thought it should. I was given Retin A cream and to stay out of the sun. Not that much to go on and of course, nothing really changed.
I went to see a Natural Path at this clinic: http://www.ccnm.edu/?q=robert_schad_naturopathic_clinic and instatly felt I had found a place where I was being treated as a human rather than just some neat disease that no ones really heard of. True, they didn't know it either - but their enthusiasm and excitment (which was hilarious I will admit) at what the possibilities were to cure and aid me in my fight was what I wanted to see from a working group of professionals.
They started me on:
B6 complex 1x 250mg/day
Fish Oil 1 tsp/day
Probiotics
Vitamin D 500 mg/day
A hypoallergetic diet
because I have been on and off antibiotics most my life from ulcers, we believe I also suffer from a Candida Albicans imbalance. This is why the probiotics and fish oil, but a strong immune and GI helps everything in your body - this is their reasoning. I also have been lactose intolerant since I was about 21 (now 26) and more and more food allergies are cropping up - so this also is to aid my growing sensitivities to foods.
The fact that it seems that the Darier's is affected by hormonal changes (it is written that a woman's cycle can make the rash more intense at certain times) is why the B6.
My team of naturopaths have taken all the info from my consultation and will follow up with me with what they find about Darier's - my lead Doctor there said this was "exciting!" and when I grimaced he said "oh not for you - but think, this is a learning facility too - everyone will want to work on it!" that made me happy!
I will return with updates, and please if you too are going through Darier's disease please post about your findings as this disease is eluding every health practitioner I encounter!!
General Discussion Ontario
Kudos for this blog post. You constantly publish a intriguing blog. I will return in future.
breville 800jexl
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Darier's
mary lou
I tried to post last week for the first time but it did not work, so I will try again. I am a 53 year old female and I was diagnoised with Darier's at the age of 15. On a scale of one to ten with ten being the worst I am a solid three. I have been to many doctor's and specialists and have tried all medications. (Accutane, Soriatane, creams, steriods, etc.) Soriatane has been the only thing that works for me. Last year I started reading the comments on this forum. Adrianna's postings were very interesting to me and so I tried her supplement suggestions and have had some good results so far. I have emailed her and she is always a good source of information and positive support.
I met with the head of Dermtology at Duke University and he was able to explain and discuss many issues with Darier's Disease. He told me that researchers have found the defective chromosone that causes the body to not be able to process the skin cells properly with Darier's and he also stated that the calcium pump in the body is also defective. I asked if we take more calcium will it help and he stated no. If you type in calcium pump and Darier's disease it will pull up information on this. He let me know that a cure for Darier's is a long way off. There are many other disease's that cause death in large numbers and most if not all patient's with Darier's live a normal life span. His hope is that research in other cures for higher priority disease's will lead to help with Darier's.
Along with Adrianna, I use Aveeno products and they are a god send. I also only use Cetaphil soap and take very short, warm showers. I wear mostly cotton clothing and use detergent that is free of all dyes and perfumes. I am carefull in the sun even though winter is my worst time. Stress is a major factor in dealing with this disease. Sometimes I think it is what others think and the questions they ask that makes us so stressed. The calmer I am the milder my breakouts are. As I reach menopause the breakouts happen less often, must be due to harmones.
I have been married for 30 years to a wonderful, understanding man and have two grown children who at the ages of 26, and 27 show no signs of Darier's. There are days when I want to pull the covers over my head when I am having a break out, but most of the time I live life to the fullest and just try to stay positive. As I told Adrianna, knowledge is power and the more we share information about Darier's the more we can help ourselves and hopefully others.
Thanks for letting an "Old Lady" vent!
Mary Lou
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Interesting post - thanks.
Interesting post - thanks. You always write a interesting article. Thanks!
hoover steamvac
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Hair Transplants India
Ya definitely this is great post.now a days various types of disease are happening,such as hair loss and other skin related problems. Hair Transplants India is a place where hair falling and skin related problems solved by various surgeons so if you are suffering from hair falling and baldness than go for hair transplants on that center.
HARRY
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Im not quite familiar with
Im not quite familiar with that disease. But its a good thing you've shared your experience. Thank you Get well soon
convection microwave
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look down, I posted twice
look down, I posted twice and there is no delete option!
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Its been a couple weeks...March 24
My follow up with the naturopath was mostly a physical check up - next time they will do blood and urine samples. They checked everything from thyroid, liver, kidney tenderness.
Then the phone rang: my pap came back for the 2nd time in 6 months as ASCUS. So I have that on my plate as well. For this they prescribed a caster oil pack, cod liver oil, estrogen lessening foods such as broccoli, cauliflower, dark leafy greens and brussel sprouts.
I have been on a hypoallergetic diet and am now reintroducing soy products (being lactose intolerant I need need need soy!)
I also just started reintroducing 500 mg of vitamin C and 1 capsule of high potency fish oil. And I am still doing 500 mg of B6, 500 mg of Vit D, and probiotics twice a day.
My retin-A cream ran out - and for 50$ a tube I am trying pure vitamin A capsules broken onto my skin and massaged. I will do this for one week and see if it gets worse/better. It has lessened in scaly-ness and less red bumps and the open sores have been gone for a couple weeks now. Its itchy a lot more too. I have flakey dry skin that needs exfoliating even though it still is tender.
A friend commented that her skin gets very much like mine when shes around wool - particularly scarves. Seeing as this comes around winter time aka when I start wearing scarves, I am going to see if taking wool out of the equation also lessens my neck rash. It is, and always has been only on my neck.
Will report on the vitamin a substitute
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April 8 2009 update
So this was my 3rd visit to the naturopath and this time I noted the following to them:
Vit A capsules broken onto skin doesn't do much at all except lubricate without stinging
My Vaseline Intensive Care Vit A & E are now burning when I put it on
My rask/bumps are moving down my neck past collar bones to my chest in a polo shirt V neck pattern. As well the left side of my face is now red and has minor bumps.
I re-started the retin-A cream for the past week and a bit and it is not taking away anything just yet. It is flaky and sensitive from this cream.
Naturopath said:
Vit A 1,000 IU daily is fine up to 10,000 IU for a shirt period of time should I need
Fish oil every day (I was rotating)
Vitamin C everyday 250 NOT CHEWABLE because chewable gave me cankers in my mouth!
Continue with B6 and Vitamin D daily with probiotics at meals.
Added: Zinc and Copper 1/day - as these both help heal damaged skin
peppermint oil should I need it for my stomache and bowl
Aveeno anti itch cream for use instead of polysporin
Watch: cashews and mangos - they are a part of the poison ivy family and I am already sensitive to mangos.
Taken away: Soy, I reintroduced it and viola, more rash? could it be the soy - I will test it. It was in my diet for 2 weeks and the past 3 days the bumps just keep coming. Only on my neck and chest though. **About 5 days ago 5 or so bumps on my ribs/midriff appeared - used retin A and polysporin and they died off...**
Think about: B12 injections as they can be very good for skin disorders and relaxing the body. it would be 11$/shot/wk
Also the ASCUS turned into a colponoscopy - which in turn saw nothing abnormal in my cervix - she thinks - and a BIG THINK - nothing definitive; that if my darier's is a skin disorder then it may be affecting skin cells throughout my body including the lining of my cervix.
I have started to take photos of my rash to try and log the changes. I do so at least once a week but I may do it more.
And finally I have asked for my fathers medical history and diagnosis of his psoriasis - if he had a biopsy or not as this disorder is autosomal - meaning it goes from generation to generation never skipping a line - so one of my parents has to have it or its not darier's - so I'm looking for a lineage of this disease in my family now.
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June 22 2009 Update
So I went to the Dermatologist for a biopsy with my dad - as he has Psoriasis so naturally I would have to assume he is the genetic link to my disease. the Dermatologist laughed and said "no he doesn't need a biopsy - you have the disease - he didn't give it to you! Your body made it for itself!"
WHAT?! Why would it do that?!
My brain has to theorize this: if my mom has moles, my dad has psoriasis then I have the genetic mix match of this and my body made a decision to go neither way but make up a new path = darier's white disorder?! GREAT.
So my dad was feeling much better but I was feeling lousy. The Dermo was explaining my brothers will most likely not have it. But we won't know until they are in their late twenties or early thirties. Just like me. But my kids, should I have any, will have a 50% chance of contracting this disorder. Great.
Since my last post I have had a really good reaction to the Zinc/copper. So much so that my Natural Path wants me to take it twice a day. I don't know if I can do that - its a mineral and its harsh! you have to take it with lots of food and even then I sometimes throw up. But my skin is looking much better with it. that and the fish oil is great. I sometimes take a vitamin A 10,000 IU at bed time (all with my cream from the Dermo: Retin A) and I like what I am seeing.
You can go here to see my skin results: http://www.flickr.com/photos/adriannap/sets/72157620223217212
I try to take some pictures every now and again to show myself I am in fact improving as its depressing to wake up everyday to it as I'm sure we all hate that skin regime to get out of the house...
I have also found that soy is not good for my skin nor my body in any large amounts. And white wine is going under the microscope as I had some at a party twice now and my skin freaked after both occasions - but I was at a party eating various things that perhaps I shouldn't... but the common factor was white wine. Red doesn't seem to affect it but that too will be looked at.
I haven't explored the B12 injections due to finances - but I'm still interested... Aveeno is my sanity! It doesn't sting - it is my cleanser, my body wash, my face scrub and soon to be my sunscreen - I LOVE IT! For anyone with a sensitivity this is for you!!
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July 10 2009
New pictures are up -
Since I'm now also working at the Tea Shop around the corner I have been reading up on tea and healing properties... I'm drinking a maple tea: http://www.davidstea.com/organic-maple.html which has zinc in it to help my skin and immunity. Also I have been trying this one: http://www.davidstea.com/night-out.html which has Vitamin A and olive leaf in it. Plus giving this a try for my all around health instead of coffee: http://www.davidstea.com/coffee-pu-erh.html it is akin to probiotics in a natural state - its a good cleaner of your innards and I know I need that!
talking to customers I happened to meet "Nadia" a pharmacist who got to talking to me because there was a book on the tea shop wall saying "Foods that Fight Cancer" which she scoffed at and we got to talking about how everything is connected: mind and body - what you eat and everything in between. She said I need to check out http://www.pycnogenol.com/flash/ at 50 mg once a day, http://en.wikipedia.org/wiki/Coenzyme_Q10 100 mg per day, and Omega 3's at 100 mgs twice a day.
I will look into those - and keep drinking tea! because I'm addicted already to tea so why not ones built to help me?
Still haven't braved the B12 injections...
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August 2009
If I had one thing to say it would be:
THANK YOU NADIA THE PHARMACIST! Since using Pine Bark extract or Pyncegol my rashes have all but gone away!!
I was scared because I had a vacation in LA and I didn't want to show off my lovely rash but I barely used make up and by introducing it into my cocktail of supplements I really think I have caught on to something really great for my skin!
I checked out the Encyclopedia of Nutrtional Supplements http://www.amazon.com/Encyclopedia-Nutritional-Supplements-Essential-Imp... and read up on what exactly is happening in my body that makes this a wonder drug...
turns out that the pine bark extract is a flavonoid - a PCO (procyanidolic oligomers) which means its a huge antioxidant and free-radical and works to deplete the destruction of collagen which is the support structure of skin and blood vessels in the body. Its antioxidant rate is 50x that of Vit A and E! So get out there and pick this up! either Grape Seed extract or Maritime Pine Bark - pyncegol has been branded so just look for what ever brand you trust and try these antioxidants. And research for yourself - flavonoids are what people rave about when they say Green Tea is so good for you - so look it up, its worth it!
I also found this interesting in the Encyclopedia & A-Z Guide to Drug-Herb-Vitamin Interactions....
While reading about my topical cream Retin-A :
"Severe cystic acne and disorders of KERATINIZATION, such as Darier's disease... or hyperkeratosis" it listed Darier's!! In a widely publicized book. Wow. That's a first. It says that zinc is an agent for Vit A to be absorbed, as well as Vit E. So my Vit A or Retin-A cream will work better with my body if I take my Zinc Copper balance - in other words I can't skimp out on the zinc :( I was looking for things to cut in my cocktail of supplements but it looks like the new mix is here to stay - with the pine bark! Also the PCO has no drug interactions! It truly is a miracle supplement!!
I find the pine bark can be taken whenever - with a glass of water or with food, and no where does it say that its a bad choice either way. Mean while Zinc will make me sick to my stomach and has made me dash to the lou if I don't eat enough. So beware.
Lessons learned:
Protein and zinc are necessary for retinal mobilization
Vit A needs zinc and/or vit E to work properly
pine bark is awesome. I'm taking 50 mg/day mid day - it says I can up it to 150-300 for therapy (which I have come to know as short periods of time) **I will have to talk to my natural path about this one...
Eat more dried apricots, chili peppers, kale and sweet potatoes, cherries and paprika - so says it for skin disorders
Read up on more Flavonoids like Quercetin as its an anti-inflammatory... it can be found in fried onions (yum!)
Look into introducing CoQ10 and Vit E
On a side note - I have purchased this awesome cookbook: http://www.amazon.com/Baking-Agave-Nectar-Ultimate-Sweetener/dp/15876132... because I find sugar makes my rash appear more pronounced (and it gives me headaches...)
**be warned - agave makes your intestines move and shake and you can't have too much at one time so I would recommend splitting the agave needs with buckwheat honey which was also recommended to me by "Nadia"
best wishes and let me know if you find anything fantastic!
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Nov 2009
It has been a whole year since I started this journey to find out what was wrong with my skin and later find out I was diagnosed with Darier's Disorder.
I can thankfully say I have a therapy that works for me and my skin is mostly clear of any signs of the disorder. Yes, I get flare ups when I'm eating improperly, overly stressed, or its that wonderful time of the month (eep!) but really day to day life is no longer filled with tears or rashes that ache.
I want to take a moment to thank everyone - who I have met along the way that offered support either in hugs or medicine, treatment or just a shoulder to cry on. Also to those I have not met or met yet that I hope this blog speaks to you and allows you to seek out treatments that work for you.
I have met several people living with Darier's from this blog and I hope to continue to do so - not that I like hearing you too may be afflicted but that we can be a community for eachother and keep ourselves informed and also encourage eachother to help ourselves find a way of life suitable to our own needs especially when faced with a genetic disorder.
Thanks again everyone.
Nothing new to report other than I'm in a play (yes I'm acting again thanks to skin that will again allow make up artists near it!) and I have slowly gaining my momentum and confidence that was dashed one year ago. *insert big smile here*
What I'm taking now:
b12 b6 100 mg each day
vit d 1000 ui each day
Maritime Pine Bark Extract each day 30 mg
Alternating:
zinc/copper 15 mg
omega
vit c 50 mg
Calcium supplement
probiotics
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Darier's Disease
I posted information on General Discussion maybe you would like to refer to it.My email address is sandy.b1@hotmail.com Look forward to hearing from you and we can compare our treatments with each other.Take care Best regards Sandy
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I too have Darier's Disease
I too have Darier's Disease and I am going through an outbreak at the moment which is my worse yet. I am 36 years old, had my first symptoms at age 13 but diagnosed at 22. From your pics, the pattern of mine is almost identical to yours and those pics could easily have been of me. I would like to email you rather than talk over the forum. I have tried so many lotions, creams, pills- we could compare notes. If you would like, I would email you. Thanks.
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of course!
you can email me at adriannasemail @ gmail . com
hope to hear from you! and I'm posting some great stuff I have learned right after I click send on this!
all the best,
Adri
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December 2009
A new photo is up on my flickr: http://www.flickr.com/photos/adriannap/4192307445/
Still in the clear! I do have occasional bumps but no rash like I had last year. I remember it being painful to wear anything with a collar - but that I wanted to so I could hide the rash :( This year is different! And I hope it is with you too!
I keep getting emails - and I love it! I am so thankful to be able to pay it forward! If you have Darier's the best advice I can give is keep trying - keep reaching out for more answers because it is such a little known disorder and doctors can get flustered by the lack of documented cases. I also suggest taking down your stress levels as stress will only make you flare up. I know I know, it's the motto for life right? Destress. But yoga, a good book, a comedic movie, a healthy dinner - anything that makes you destress or puts you in a relaxing mood will help! So around this time of year it may be that the bumps flare up because we are eating overly sugary foods or that we haven't done our xmas shopping yet - all stress. At the end of each day allow yourself to be relax. "Leave it at the door" as many directors say; it won't be there tomorrow so let it go.
Now I sound like a guru or something. I hope you can take from this blog what you will. It was also a way for me to destress. A way to let me let go of my frustration with my skin.
So Happy Holidays and here is to a rash free New Year!
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January Winter Blues
I have started having email conversations with some of you lovely people who have read my blogs over the past year. A Mary Lou writes that she has intel about calcium and Darier`s. I hope she can log in soon to talk about it as I think I need more information about it before I blog about the correlation. But I am intrigued as I have always had a strong reaction to too much calcium in my system - to the point I get zit-like peaks in my skin especially on my face (gee where did my Dariers first appear?) and they slowly disappear. I cant attack them like popping a zit or wash my face enough, and it is definitely around calcium as I have logged it in my books. That and Vit. C I don`t get along great with but I must take supplements because I dont eat/drink enough of them.
My back has now been a canvas for Darier`s - no picture as its hard to photo your own back! But it was a light inflammation due to what I can only conclude is from a holiday season of sugary foods, too much alcohol (which is terrible for my Darier`s as there is dehydration and sugar jammed into a lil wine glass) and such stress dealing with family and recent events.
I also started taking my clear skin for granted and lessened my regime of pills. I am back on Pine Bark everyday and B, D, alternate C, Omegas occasional, and Vit A - which ran out in December and I just shrugged about it. Mistakes were made. I am just thankful it wasn`t my face and neck that blew out of control.
So I`m back to yoga and exercise. Water and supplements daily. I also still enjoy tea - but for every cup of tea I have a cup of water as it can sneak away hydration from you and caffeine is a fiend as well.
So yes - the moral is - DO NOT fall under the spell that your disorder is just going away. It is not. Stay on top of your own health and take care. It is work. But the reward is totally worth it!
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March 1 2010
Like I didn't already know but: I have had a relapse of symptoms but its funny how I can pin point where it stems from since I have had such a good study of myself and all the effects "things" have on me...
I drank white wine in abundance at a friends dinner party. I have forgotten to renew my supply of pine bark for 5 days (life got busy!), because life is busy = more stress, I ate butter by accident (thanks restaurant that lied to me) and my digestive system has been stressed because of it.
All these things led to me getting a break out on my chest and back. Interesting how it didn't reappear on my neck. Though I have be noticing if something is scratchy or its too dry my skin goes red very quickly and stays red with bumps. I would say more so than most. It is the winter time when its much dryer and the cold winds don't help - as Mary Lou was saying above - Winter is my worst time of year.
The lesson learned: don't skimp out on Pine Bark or whatever works for you. AND remember that everything is connected so do yoga or meditate or watch a funny movie - stress is a major factor in this game.
Hope you are all doing well ~ until next time!
Adrianna
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Pine Bark
Adrianna,
I have tried this for almost 7 days and i have notice a small improvment in the rash on my neck and the rest of my bosy seems to itch alot less, I found an over the counter cream with pine bark extract in it, it was 26.00 us dollars so i didn't buy it but my mother surprised me with it today, i will post my results after a weeks use. I have found your blog very helpful and it gives me renewed hope. Thank You for saring.
Cindy
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mary lou Hello, My surgery
mary lou
Hello,
My surgery went really well and it had some interesting results for Darier's. They put me on mega doses of vitamins two weeks before the surgery and they contained B6, B12 and the usual D,A,E,etc. Granted it was in high doses but what a difference it made in my skin. The surgery also included lasers and to my surprise the Darier's is now not visable in those areas as it was before. I am going to wait to pass judgement on if the laser was the reason. I am staying on a lower dose of the vitamins to see if they continue to help. They come in a pack distributed by doctors, it is called Vitasurge. My skin has never looked better. I am also using a line of skin products called Revision. The doctor recomended them and they are so far great. But as we all know time will tell. I am still using Aveeno as my daily lotion. I take short warm showers and immediatly put the Aveeno (oat essense) lotion on all over. If I do that everyday without fail things are much improved. Like you say, you have to manage it everyday without fail. Can't wait till summer!
Mary Lou
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SO good to hear that your
SO good to hear that your surgery went well AND that you had some bonus side effects! I find that the high doses do well for my skin too - I still have to see a Natural Path to see if this will hinder me in the long run though... Have you talked to a sustainable amount for skin therapy?
I have never heard of Revision or Vitasurge but thank you for letting us know ~ I will look into them for sure: taking individual doses can be really annoying at times but the results are worth it...but if there is a compact version of what I take daily...
I found the note the "Nadia" lady gave me with the dosages she recommended that finally led to my remission of sorts - I am nervous to call her and tell her that she is in fact my own personal goddess! I'm thinking of giving her flowers or something. What would be better is if this site hosts a get together in TO I would love to call her and have her speak about what she has learned as a pharmacist. She is obviously very skilled.
Thanks for sharing and I hope to hear more great news from you and everyone else!
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mary lou Hello, I hope this
mary lou
Hello,
I hope this finds you feeling well. The weather has turned warm and I am so glad for that. Still doing well from the surgery. I am still taking the vitamins and using the products that the doctor recommened with good results. I would love to have Nadia at least correspond with us. I am not sure if that is allowed by her company due to regulations (malpractice). As I have said before knowledge is power. The name of the vitamins is VITAMEDICA, I had it wrong on previous post. I do believe the relationship between laser use and Darier's clearing is there but would like to see more research information from doctor's. I hope we all have a free and clear summer!
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Happy sunshine in a sun hat to you too!
I just looked up that line of vitamins: VITAMEDICA; http://vitamedica.com/ is it the Healthy Skin line he recommended? It looks interesting and promising if you are having good results!
I just had a lovely letter from Maria and through our correspondence I turned this up:
http://www.tomsofmaine.com/products/deodorant#/?page=Deodorant it's a deodorant that my friend swears by and could be good for sensitive skin such as ours. I have yet to try it as I'm still ok with Ivory's "sensitive" skin line for under my arms.
Also a reminder that if you are in Ontario you can always call Telehealth 1-866-797-0000 TTY : 1-866-797-0007 (now they will probably be mind boggled by our story of Darier's!) but you can talk about mixing pills/vitamins/supplements and how to deal with the sun effectively in your own way. What works for me may not work for you! So keep talking and asking questions until you find your answer.
I also saw an ad for this: a sunblock spf 100!! http://www.helioplex360.neutrogena.com/?utm_source=n_com&utm_medium=refe...
(theres even a click link for a coupon) I think I may try it - I have to buy some anyway - though I do like Aveeno's spray 45 or 60.
with a follow up from Oprah ;) http://www.oprah.com/health/The-Benefits-of-SPF-100
And don't be lazy! I have been drinking summer patio drinks already and the sugar is taking it out on my skin - and buy some new sun hats, there are some great ones at Winners right now in Canada - now I have 5 :) My fav is now a huge tan and white floppy that extends to my shoulders! What's your favourite?
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Calcium
mary lou
Hello,
I hope the summer is off to a good start! I had a bone density test last week and it showed signs of pre stages of osteoporosis. My doctor started me on calcium and much to my displeasure it has caused my Darier's to flare a little. Has anyone else had this experience? I am seeing her in two weeks and have stopped taking it to see if the flare up goes away. I was doing so well up until that point. Oh well so the journey continues!
Mary Lou
I used to belong to a website called skinpatientalliance.ca but it shut down so I couldn't get to my posts or reply or anything... So here is my own blog to help raise awareness of Darier's White Disorder or Dariers Disease or DD.
I have it. I'm living with it. And I'm owning it. Here's how I did it starting with the blog I had started back in 2009 - this will be one huge post but after this I hope to keep up the conversation here and at the new skin site called www.skinergy.ca where I am now logged on as Adrianna P
I didn't edit this - It has all the comments rolled into it that I received from posting my "blog" on their site.
Enjoy and hope to hear from you!
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Forum Post:
Darier's DiseaseView Edit Outline
I have posted in the "share your story" how I came to know what my disease is: Darier's Disease http://dermnetnz.org/scaly/darier.html
And now I wanted to start a discussion/blog on what I have been doing to try and live with it and try to "make it go away".
After being paraded around in front of 30 or so dermatologists this rare disease is not getting the time and effort I thought it should. I was given Retin A cream and to stay out of the sun. Not that much to go on and of course, nothing really changed.
I went to see a Natural Path at this clinic: http://www.ccnm.edu/?q=robert_schad_naturopathic_clinic and instatly felt I had found a place where I was being treated as a human rather than just some neat disease that no ones really heard of. True, they didn't know it either - but their enthusiasm and excitment (which was hilarious I will admit) at what the possibilities were to cure and aid me in my fight was what I wanted to see from a working group of professionals.
They started me on:
B6 complex 1x 250mg/day
Fish Oil 1 tsp/day
Probiotics
Vitamin D 500 mg/day
A hypoallergetic diet
because I have been on and off antibiotics most my life from ulcers, we believe I also suffer from a Candida Albicans imbalance. This is why the probiotics and fish oil, but a strong immune and GI helps everything in your body - this is their reasoning. I also have been lactose intolerant since I was about 21 (now 26) and more and more food allergies are cropping up - so this also is to aid my growing sensitivities to foods.
The fact that it seems that the Darier's is affected by hormonal changes (it is written that a woman's cycle can make the rash more intense at certain times) is why the B6.
My team of naturopaths have taken all the info from my consultation and will follow up with me with what they find about Darier's - my lead Doctor there said this was "exciting!" and when I grimaced he said "oh not for you - but think, this is a learning facility too - everyone will want to work on it!" that made me happy!
I will return with updates, and please if you too are going through Darier's disease please post about your findings as this disease is eluding every health practitioner I encounter!!
General Discussion Ontario
Kudos for this blog post. You constantly publish a intriguing blog. I will return in future.
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Darier's
mary lou
I tried to post last week for the first time but it did not work, so I will try again. I am a 53 year old female and I was diagnoised with Darier's at the age of 15. On a scale of one to ten with ten being the worst I am a solid three. I have been to many doctor's and specialists and have tried all medications. (Accutane, Soriatane, creams, steriods, etc.) Soriatane has been the only thing that works for me. Last year I started reading the comments on this forum. Adrianna's postings were very interesting to me and so I tried her supplement suggestions and have had some good results so far. I have emailed her and she is always a good source of information and positive support.
I met with the head of Dermtology at Duke University and he was able to explain and discuss many issues with Darier's Disease. He told me that researchers have found the defective chromosone that causes the body to not be able to process the skin cells properly with Darier's and he also stated that the calcium pump in the body is also defective. I asked if we take more calcium will it help and he stated no. If you type in calcium pump and Darier's disease it will pull up information on this. He let me know that a cure for Darier's is a long way off. There are many other disease's that cause death in large numbers and most if not all patient's with Darier's live a normal life span. His hope is that research in other cures for higher priority disease's will lead to help with Darier's.
Along with Adrianna, I use Aveeno products and they are a god send. I also only use Cetaphil soap and take very short, warm showers. I wear mostly cotton clothing and use detergent that is free of all dyes and perfumes. I am carefull in the sun even though winter is my worst time. Stress is a major factor in dealing with this disease. Sometimes I think it is what others think and the questions they ask that makes us so stressed. The calmer I am the milder my breakouts are. As I reach menopause the breakouts happen less often, must be due to harmones.
I have been married for 30 years to a wonderful, understanding man and have two grown children who at the ages of 26, and 27 show no signs of Darier's. There are days when I want to pull the covers over my head when I am having a break out, but most of the time I live life to the fullest and just try to stay positive. As I told Adrianna, knowledge is power and the more we share information about Darier's the more we can help ourselves and hopefully others.
Thanks for letting an "Old Lady" vent!
Mary Lou
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Interesting post - thanks.
Interesting post - thanks. You always write a interesting article. Thanks!
hoover steamvac
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Hair Transplants India
Ya definitely this is great post.now a days various types of disease are happening,such as hair loss and other skin related problems. Hair Transplants India is a place where hair falling and skin related problems solved by various surgeons so if you are suffering from hair falling and baldness than go for hair transplants on that center.
HARRY
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Im not quite familiar with
Im not quite familiar with that disease. But its a good thing you've shared your experience. Thank you Get well soon
convection microwave
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look down, I posted twice
look down, I posted twice and there is no delete option!
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Its been a couple weeks...March 24
My follow up with the naturopath was mostly a physical check up - next time they will do blood and urine samples. They checked everything from thyroid, liver, kidney tenderness.
Then the phone rang: my pap came back for the 2nd time in 6 months as ASCUS. So I have that on my plate as well. For this they prescribed a caster oil pack, cod liver oil, estrogen lessening foods such as broccoli, cauliflower, dark leafy greens and brussel sprouts.
I have been on a hypoallergetic diet and am now reintroducing soy products (being lactose intolerant I need need need soy!)
I also just started reintroducing 500 mg of vitamin C and 1 capsule of high potency fish oil. And I am still doing 500 mg of B6, 500 mg of Vit D, and probiotics twice a day.
My retin-A cream ran out - and for 50$ a tube I am trying pure vitamin A capsules broken onto my skin and massaged. I will do this for one week and see if it gets worse/better. It has lessened in scaly-ness and less red bumps and the open sores have been gone for a couple weeks now. Its itchy a lot more too. I have flakey dry skin that needs exfoliating even though it still is tender.
A friend commented that her skin gets very much like mine when shes around wool - particularly scarves. Seeing as this comes around winter time aka when I start wearing scarves, I am going to see if taking wool out of the equation also lessens my neck rash. It is, and always has been only on my neck.
Will report on the vitamin a substitute
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April 8 2009 update
So this was my 3rd visit to the naturopath and this time I noted the following to them:
Vit A capsules broken onto skin doesn't do much at all except lubricate without stinging
My Vaseline Intensive Care Vit A & E are now burning when I put it on
My rask/bumps are moving down my neck past collar bones to my chest in a polo shirt V neck pattern. As well the left side of my face is now red and has minor bumps.
I re-started the retin-A cream for the past week and a bit and it is not taking away anything just yet. It is flaky and sensitive from this cream.
Naturopath said:
Vit A 1,000 IU daily is fine up to 10,000 IU for a shirt period of time should I need
Fish oil every day (I was rotating)
Vitamin C everyday 250 NOT CHEWABLE because chewable gave me cankers in my mouth!
Continue with B6 and Vitamin D daily with probiotics at meals.
Added: Zinc and Copper 1/day - as these both help heal damaged skin
peppermint oil should I need it for my stomache and bowl
Aveeno anti itch cream for use instead of polysporin
Watch: cashews and mangos - they are a part of the poison ivy family and I am already sensitive to mangos.
Taken away: Soy, I reintroduced it and viola, more rash? could it be the soy - I will test it. It was in my diet for 2 weeks and the past 3 days the bumps just keep coming. Only on my neck and chest though. **About 5 days ago 5 or so bumps on my ribs/midriff appeared - used retin A and polysporin and they died off...**
Think about: B12 injections as they can be very good for skin disorders and relaxing the body. it would be 11$/shot/wk
Also the ASCUS turned into a colponoscopy - which in turn saw nothing abnormal in my cervix - she thinks - and a BIG THINK - nothing definitive; that if my darier's is a skin disorder then it may be affecting skin cells throughout my body including the lining of my cervix.
I have started to take photos of my rash to try and log the changes. I do so at least once a week but I may do it more.
And finally I have asked for my fathers medical history and diagnosis of his psoriasis - if he had a biopsy or not as this disorder is autosomal - meaning it goes from generation to generation never skipping a line - so one of my parents has to have it or its not darier's - so I'm looking for a lineage of this disease in my family now.
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June 22 2009 Update
So I went to the Dermatologist for a biopsy with my dad - as he has Psoriasis so naturally I would have to assume he is the genetic link to my disease. the Dermatologist laughed and said "no he doesn't need a biopsy - you have the disease - he didn't give it to you! Your body made it for itself!"
WHAT?! Why would it do that?!
My brain has to theorize this: if my mom has moles, my dad has psoriasis then I have the genetic mix match of this and my body made a decision to go neither way but make up a new path = darier's white disorder?! GREAT.
So my dad was feeling much better but I was feeling lousy. The Dermo was explaining my brothers will most likely not have it. But we won't know until they are in their late twenties or early thirties. Just like me. But my kids, should I have any, will have a 50% chance of contracting this disorder. Great.
Since my last post I have had a really good reaction to the Zinc/copper. So much so that my Natural Path wants me to take it twice a day. I don't know if I can do that - its a mineral and its harsh! you have to take it with lots of food and even then I sometimes throw up. But my skin is looking much better with it. that and the fish oil is great. I sometimes take a vitamin A 10,000 IU at bed time (all with my cream from the Dermo: Retin A) and I like what I am seeing.
You can go here to see my skin results: http://www.flickr.com/photos/adriannap/sets/72157620223217212
I try to take some pictures every now and again to show myself I am in fact improving as its depressing to wake up everyday to it as I'm sure we all hate that skin regime to get out of the house...
I have also found that soy is not good for my skin nor my body in any large amounts. And white wine is going under the microscope as I had some at a party twice now and my skin freaked after both occasions - but I was at a party eating various things that perhaps I shouldn't... but the common factor was white wine. Red doesn't seem to affect it but that too will be looked at.
I haven't explored the B12 injections due to finances - but I'm still interested... Aveeno is my sanity! It doesn't sting - it is my cleanser, my body wash, my face scrub and soon to be my sunscreen - I LOVE IT! For anyone with a sensitivity this is for you!!
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July 10 2009
New pictures are up -
Since I'm now also working at the Tea Shop around the corner I have been reading up on tea and healing properties... I'm drinking a maple tea: http://www.davidstea.com/organic-maple.html which has zinc in it to help my skin and immunity. Also I have been trying this one: http://www.davidstea.com/night-out.html which has Vitamin A and olive leaf in it. Plus giving this a try for my all around health instead of coffee: http://www.davidstea.com/coffee-pu-erh.html it is akin to probiotics in a natural state - its a good cleaner of your innards and I know I need that!
talking to customers I happened to meet "Nadia" a pharmacist who got to talking to me because there was a book on the tea shop wall saying "Foods that Fight Cancer" which she scoffed at and we got to talking about how everything is connected: mind and body - what you eat and everything in between. She said I need to check out http://www.pycnogenol.com/flash/ at 50 mg once a day, http://en.wikipedia.org/wiki/Coenzyme_Q10 100 mg per day, and Omega 3's at 100 mgs twice a day.
I will look into those - and keep drinking tea! because I'm addicted already to tea so why not ones built to help me?
Still haven't braved the B12 injections...
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August 2009
If I had one thing to say it would be:
THANK YOU NADIA THE PHARMACIST! Since using Pine Bark extract or Pyncegol my rashes have all but gone away!!
I was scared because I had a vacation in LA and I didn't want to show off my lovely rash but I barely used make up and by introducing it into my cocktail of supplements I really think I have caught on to something really great for my skin!
I checked out the Encyclopedia of Nutrtional Supplements http://www.amazon.com/Encyclopedia-Nutritional-Supplements-Essential-Imp... and read up on what exactly is happening in my body that makes this a wonder drug...
turns out that the pine bark extract is a flavonoid - a PCO (procyanidolic oligomers) which means its a huge antioxidant and free-radical and works to deplete the destruction of collagen which is the support structure of skin and blood vessels in the body. Its antioxidant rate is 50x that of Vit A and E! So get out there and pick this up! either Grape Seed extract or Maritime Pine Bark - pyncegol has been branded so just look for what ever brand you trust and try these antioxidants. And research for yourself - flavonoids are what people rave about when they say Green Tea is so good for you - so look it up, its worth it!
I also found this interesting in the Encyclopedia & A-Z Guide to Drug-Herb-Vitamin Interactions....
While reading about my topical cream Retin-A :
"Severe cystic acne and disorders of KERATINIZATION, such as Darier's disease... or hyperkeratosis" it listed Darier's!! In a widely publicized book. Wow. That's a first. It says that zinc is an agent for Vit A to be absorbed, as well as Vit E. So my Vit A or Retin-A cream will work better with my body if I take my Zinc Copper balance - in other words I can't skimp out on the zinc :( I was looking for things to cut in my cocktail of supplements but it looks like the new mix is here to stay - with the pine bark! Also the PCO has no drug interactions! It truly is a miracle supplement!!
I find the pine bark can be taken whenever - with a glass of water or with food, and no where does it say that its a bad choice either way. Mean while Zinc will make me sick to my stomach and has made me dash to the lou if I don't eat enough. So beware.
Lessons learned:
Protein and zinc are necessary for retinal mobilization
Vit A needs zinc and/or vit E to work properly
pine bark is awesome. I'm taking 50 mg/day mid day - it says I can up it to 150-300 for therapy (which I have come to know as short periods of time) **I will have to talk to my natural path about this one...
Eat more dried apricots, chili peppers, kale and sweet potatoes, cherries and paprika - so says it for skin disorders
Read up on more Flavonoids like Quercetin as its an anti-inflammatory... it can be found in fried onions (yum!)
Look into introducing CoQ10 and Vit E
On a side note - I have purchased this awesome cookbook: http://www.amazon.com/Baking-Agave-Nectar-Ultimate-Sweetener/dp/15876132... because I find sugar makes my rash appear more pronounced (and it gives me headaches...)
**be warned - agave makes your intestines move and shake and you can't have too much at one time so I would recommend splitting the agave needs with buckwheat honey which was also recommended to me by "Nadia"
best wishes and let me know if you find anything fantastic!
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Nov 2009
It has been a whole year since I started this journey to find out what was wrong with my skin and later find out I was diagnosed with Darier's Disorder.
I can thankfully say I have a therapy that works for me and my skin is mostly clear of any signs of the disorder. Yes, I get flare ups when I'm eating improperly, overly stressed, or its that wonderful time of the month (eep!) but really day to day life is no longer filled with tears or rashes that ache.
I want to take a moment to thank everyone - who I have met along the way that offered support either in hugs or medicine, treatment or just a shoulder to cry on. Also to those I have not met or met yet that I hope this blog speaks to you and allows you to seek out treatments that work for you.
I have met several people living with Darier's from this blog and I hope to continue to do so - not that I like hearing you too may be afflicted but that we can be a community for eachother and keep ourselves informed and also encourage eachother to help ourselves find a way of life suitable to our own needs especially when faced with a genetic disorder.
Thanks again everyone.
Nothing new to report other than I'm in a play (yes I'm acting again thanks to skin that will again allow make up artists near it!) and I have slowly gaining my momentum and confidence that was dashed one year ago. *insert big smile here*
What I'm taking now:
b12 b6 100 mg each day
vit d 1000 ui each day
Maritime Pine Bark Extract each day 30 mg
Alternating:
zinc/copper 15 mg
omega
vit c 50 mg
Calcium supplement
probiotics
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Darier's Disease
I posted information on General Discussion maybe you would like to refer to it.My email address is sandy.b1@hotmail.com Look forward to hearing from you and we can compare our treatments with each other.Take care Best regards Sandy
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I too have Darier's Disease
I too have Darier's Disease and I am going through an outbreak at the moment which is my worse yet. I am 36 years old, had my first symptoms at age 13 but diagnosed at 22. From your pics, the pattern of mine is almost identical to yours and those pics could easily have been of me. I would like to email you rather than talk over the forum. I have tried so many lotions, creams, pills- we could compare notes. If you would like, I would email you. Thanks.
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of course!
you can email me at adriannasemail @ gmail . com
hope to hear from you! and I'm posting some great stuff I have learned right after I click send on this!
all the best,
Adri
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December 2009
A new photo is up on my flickr: http://www.flickr.com/photos/adriannap/4192307445/
Still in the clear! I do have occasional bumps but no rash like I had last year. I remember it being painful to wear anything with a collar - but that I wanted to so I could hide the rash :( This year is different! And I hope it is with you too!
I keep getting emails - and I love it! I am so thankful to be able to pay it forward! If you have Darier's the best advice I can give is keep trying - keep reaching out for more answers because it is such a little known disorder and doctors can get flustered by the lack of documented cases. I also suggest taking down your stress levels as stress will only make you flare up. I know I know, it's the motto for life right? Destress. But yoga, a good book, a comedic movie, a healthy dinner - anything that makes you destress or puts you in a relaxing mood will help! So around this time of year it may be that the bumps flare up because we are eating overly sugary foods or that we haven't done our xmas shopping yet - all stress. At the end of each day allow yourself to be relax. "Leave it at the door" as many directors say; it won't be there tomorrow so let it go.
Now I sound like a guru or something. I hope you can take from this blog what you will. It was also a way for me to destress. A way to let me let go of my frustration with my skin.
So Happy Holidays and here is to a rash free New Year!
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January Winter Blues
I have started having email conversations with some of you lovely people who have read my blogs over the past year. A Mary Lou writes that she has intel about calcium and Darier`s. I hope she can log in soon to talk about it as I think I need more information about it before I blog about the correlation. But I am intrigued as I have always had a strong reaction to too much calcium in my system - to the point I get zit-like peaks in my skin especially on my face (gee where did my Dariers first appear?) and they slowly disappear. I cant attack them like popping a zit or wash my face enough, and it is definitely around calcium as I have logged it in my books. That and Vit. C I don`t get along great with but I must take supplements because I dont eat/drink enough of them.
My back has now been a canvas for Darier`s - no picture as its hard to photo your own back! But it was a light inflammation due to what I can only conclude is from a holiday season of sugary foods, too much alcohol (which is terrible for my Darier`s as there is dehydration and sugar jammed into a lil wine glass) and such stress dealing with family and recent events.
I also started taking my clear skin for granted and lessened my regime of pills. I am back on Pine Bark everyday and B, D, alternate C, Omegas occasional, and Vit A - which ran out in December and I just shrugged about it. Mistakes were made. I am just thankful it wasn`t my face and neck that blew out of control.
So I`m back to yoga and exercise. Water and supplements daily. I also still enjoy tea - but for every cup of tea I have a cup of water as it can sneak away hydration from you and caffeine is a fiend as well.
So yes - the moral is - DO NOT fall under the spell that your disorder is just going away. It is not. Stay on top of your own health and take care. It is work. But the reward is totally worth it!
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March 1 2010
Like I didn't already know but: I have had a relapse of symptoms but its funny how I can pin point where it stems from since I have had such a good study of myself and all the effects "things" have on me...
I drank white wine in abundance at a friends dinner party. I have forgotten to renew my supply of pine bark for 5 days (life got busy!), because life is busy = more stress, I ate butter by accident (thanks restaurant that lied to me) and my digestive system has been stressed because of it.
All these things led to me getting a break out on my chest and back. Interesting how it didn't reappear on my neck. Though I have be noticing if something is scratchy or its too dry my skin goes red very quickly and stays red with bumps. I would say more so than most. It is the winter time when its much dryer and the cold winds don't help - as Mary Lou was saying above - Winter is my worst time of year.
The lesson learned: don't skimp out on Pine Bark or whatever works for you. AND remember that everything is connected so do yoga or meditate or watch a funny movie - stress is a major factor in this game.
Hope you are all doing well ~ until next time!
Adrianna
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Pine Bark
Adrianna,
I have tried this for almost 7 days and i have notice a small improvment in the rash on my neck and the rest of my bosy seems to itch alot less, I found an over the counter cream with pine bark extract in it, it was 26.00 us dollars so i didn't buy it but my mother surprised me with it today, i will post my results after a weeks use. I have found your blog very helpful and it gives me renewed hope. Thank You for saring.
Cindy
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mary lou Hello, My surgery
mary lou
Hello,
My surgery went really well and it had some interesting results for Darier's. They put me on mega doses of vitamins two weeks before the surgery and they contained B6, B12 and the usual D,A,E,etc. Granted it was in high doses but what a difference it made in my skin. The surgery also included lasers and to my surprise the Darier's is now not visable in those areas as it was before. I am going to wait to pass judgement on if the laser was the reason. I am staying on a lower dose of the vitamins to see if they continue to help. They come in a pack distributed by doctors, it is called Vitasurge. My skin has never looked better. I am also using a line of skin products called Revision. The doctor recomended them and they are so far great. But as we all know time will tell. I am still using Aveeno as my daily lotion. I take short warm showers and immediatly put the Aveeno (oat essense) lotion on all over. If I do that everyday without fail things are much improved. Like you say, you have to manage it everyday without fail. Can't wait till summer!
Mary Lou
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SO good to hear that your
SO good to hear that your surgery went well AND that you had some bonus side effects! I find that the high doses do well for my skin too - I still have to see a Natural Path to see if this will hinder me in the long run though... Have you talked to a sustainable amount for skin therapy?
I have never heard of Revision or Vitasurge but thank you for letting us know ~ I will look into them for sure: taking individual doses can be really annoying at times but the results are worth it...but if there is a compact version of what I take daily...
I found the note the "Nadia" lady gave me with the dosages she recommended that finally led to my remission of sorts - I am nervous to call her and tell her that she is in fact my own personal goddess! I'm thinking of giving her flowers or something. What would be better is if this site hosts a get together in TO I would love to call her and have her speak about what she has learned as a pharmacist. She is obviously very skilled.
Thanks for sharing and I hope to hear more great news from you and everyone else!
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mary lou Hello, I hope this
mary lou
Hello,
I hope this finds you feeling well. The weather has turned warm and I am so glad for that. Still doing well from the surgery. I am still taking the vitamins and using the products that the doctor recommened with good results. I would love to have Nadia at least correspond with us. I am not sure if that is allowed by her company due to regulations (malpractice). As I have said before knowledge is power. The name of the vitamins is VITAMEDICA, I had it wrong on previous post. I do believe the relationship between laser use and Darier's clearing is there but would like to see more research information from doctor's. I hope we all have a free and clear summer!
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Happy sunshine in a sun hat to you too!
I just looked up that line of vitamins: VITAMEDICA; http://vitamedica.com/ is it the Healthy Skin line he recommended? It looks interesting and promising if you are having good results!
I just had a lovely letter from Maria and through our correspondence I turned this up:
http://www.tomsofmaine.com/products/deodorant#/?page=Deodorant it's a deodorant that my friend swears by and could be good for sensitive skin such as ours. I have yet to try it as I'm still ok with Ivory's "sensitive" skin line for under my arms.
Also a reminder that if you are in Ontario you can always call Telehealth 1-866-797-0000 TTY : 1-866-797-0007 (now they will probably be mind boggled by our story of Darier's!) but you can talk about mixing pills/vitamins/supplements and how to deal with the sun effectively in your own way. What works for me may not work for you! So keep talking and asking questions until you find your answer.
I also saw an ad for this: a sunblock spf 100!! http://www.helioplex360.neutrogena.com/?utm_source=n_com&utm_medium=refe...
(theres even a click link for a coupon) I think I may try it - I have to buy some anyway - though I do like Aveeno's spray 45 or 60.
with a follow up from Oprah ;) http://www.oprah.com/health/The-Benefits-of-SPF-100
And don't be lazy! I have been drinking summer patio drinks already and the sugar is taking it out on my skin - and buy some new sun hats, there are some great ones at Winners right now in Canada - now I have 5 :) My fav is now a huge tan and white floppy that extends to my shoulders! What's your favourite?
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Calcium
mary lou
Hello,
I hope the summer is off to a good start! I had a bone density test last week and it showed signs of pre stages of osteoporosis. My doctor started me on calcium and much to my displeasure it has caused my Darier's to flare a little. Has anyone else had this experience? I am seeing her in two weeks and have stopped taking it to see if the flare up goes away. I was doing so well up until that point. Oh well so the journey continues!
Mary Lou
I have it. I'm living with it. And I'm owning it. Here's how I did it starting with the blog I had started back in 2009 - this will be one huge post but after this I hope to keep up the conversation here and at the new skin site called www.skinergy.ca where I am now logged on as Adrianna P
I didn't edit this - It has all the comments rolled into it that I received from posting my "blog" on their site.
Enjoy and hope to hear from you!
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Forum Post:
Darier's DiseaseView Edit Outline
I have posted in the "share your story" how I came to know what my disease is: Darier's Disease http://dermnetnz.org/scaly/darier.html
And now I wanted to start a discussion/blog on what I have been doing to try and live with it and try to "make it go away".
After being paraded around in front of 30 or so dermatologists this rare disease is not getting the time and effort I thought it should. I was given Retin A cream and to stay out of the sun. Not that much to go on and of course, nothing really changed.
I went to see a Natural Path at this clinic: http://www.ccnm.edu/?q=robert_schad_naturopathic_clinic and instatly felt I had found a place where I was being treated as a human rather than just some neat disease that no ones really heard of. True, they didn't know it either - but their enthusiasm and excitment (which was hilarious I will admit) at what the possibilities were to cure and aid me in my fight was what I wanted to see from a working group of professionals.
They started me on:
B6 complex 1x 250mg/day
Fish Oil 1 tsp/day
Probiotics
Vitamin D 500 mg/day
A hypoallergetic diet
because I have been on and off antibiotics most my life from ulcers, we believe I also suffer from a Candida Albicans imbalance. This is why the probiotics and fish oil, but a strong immune and GI helps everything in your body - this is their reasoning. I also have been lactose intolerant since I was about 21 (now 26) and more and more food allergies are cropping up - so this also is to aid my growing sensitivities to foods.
The fact that it seems that the Darier's is affected by hormonal changes (it is written that a woman's cycle can make the rash more intense at certain times) is why the B6.
My team of naturopaths have taken all the info from my consultation and will follow up with me with what they find about Darier's - my lead Doctor there said this was "exciting!" and when I grimaced he said "oh not for you - but think, this is a learning facility too - everyone will want to work on it!" that made me happy!
I will return with updates, and please if you too are going through Darier's disease please post about your findings as this disease is eluding every health practitioner I encounter!!
General Discussion Ontario
Kudos for this blog post. You constantly publish a intriguing blog. I will return in future.
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Darier's
mary lou
I tried to post last week for the first time but it did not work, so I will try again. I am a 53 year old female and I was diagnoised with Darier's at the age of 15. On a scale of one to ten with ten being the worst I am a solid three. I have been to many doctor's and specialists and have tried all medications. (Accutane, Soriatane, creams, steriods, etc.) Soriatane has been the only thing that works for me. Last year I started reading the comments on this forum. Adrianna's postings were very interesting to me and so I tried her supplement suggestions and have had some good results so far. I have emailed her and she is always a good source of information and positive support.
I met with the head of Dermtology at Duke University and he was able to explain and discuss many issues with Darier's Disease. He told me that researchers have found the defective chromosone that causes the body to not be able to process the skin cells properly with Darier's and he also stated that the calcium pump in the body is also defective. I asked if we take more calcium will it help and he stated no. If you type in calcium pump and Darier's disease it will pull up information on this. He let me know that a cure for Darier's is a long way off. There are many other disease's that cause death in large numbers and most if not all patient's with Darier's live a normal life span. His hope is that research in other cures for higher priority disease's will lead to help with Darier's.
Along with Adrianna, I use Aveeno products and they are a god send. I also only use Cetaphil soap and take very short, warm showers. I wear mostly cotton clothing and use detergent that is free of all dyes and perfumes. I am carefull in the sun even though winter is my worst time. Stress is a major factor in dealing with this disease. Sometimes I think it is what others think and the questions they ask that makes us so stressed. The calmer I am the milder my breakouts are. As I reach menopause the breakouts happen less often, must be due to harmones.
I have been married for 30 years to a wonderful, understanding man and have two grown children who at the ages of 26, and 27 show no signs of Darier's. There are days when I want to pull the covers over my head when I am having a break out, but most of the time I live life to the fullest and just try to stay positive. As I told Adrianna, knowledge is power and the more we share information about Darier's the more we can help ourselves and hopefully others.
Thanks for letting an "Old Lady" vent!
Mary Lou
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Interesting post - thanks.
Interesting post - thanks. You always write a interesting article. Thanks!
hoover steamvac
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Hair Transplants India
Ya definitely this is great post.now a days various types of disease are happening,such as hair loss and other skin related problems. Hair Transplants India is a place where hair falling and skin related problems solved by various surgeons so if you are suffering from hair falling and baldness than go for hair transplants on that center.
HARRY
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Im not quite familiar with
Im not quite familiar with that disease. But its a good thing you've shared your experience. Thank you Get well soon
convection microwave
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look down, I posted twice
look down, I posted twice and there is no delete option!
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Its been a couple weeks...March 24
My follow up with the naturopath was mostly a physical check up - next time they will do blood and urine samples. They checked everything from thyroid, liver, kidney tenderness.
Then the phone rang: my pap came back for the 2nd time in 6 months as ASCUS. So I have that on my plate as well. For this they prescribed a caster oil pack, cod liver oil, estrogen lessening foods such as broccoli, cauliflower, dark leafy greens and brussel sprouts.
I have been on a hypoallergetic diet and am now reintroducing soy products (being lactose intolerant I need need need soy!)
I also just started reintroducing 500 mg of vitamin C and 1 capsule of high potency fish oil. And I am still doing 500 mg of B6, 500 mg of Vit D, and probiotics twice a day.
My retin-A cream ran out - and for 50$ a tube I am trying pure vitamin A capsules broken onto my skin and massaged. I will do this for one week and see if it gets worse/better. It has lessened in scaly-ness and less red bumps and the open sores have been gone for a couple weeks now. Its itchy a lot more too. I have flakey dry skin that needs exfoliating even though it still is tender.
A friend commented that her skin gets very much like mine when shes around wool - particularly scarves. Seeing as this comes around winter time aka when I start wearing scarves, I am going to see if taking wool out of the equation also lessens my neck rash. It is, and always has been only on my neck.
Will report on the vitamin a substitute
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April 8 2009 update
So this was my 3rd visit to the naturopath and this time I noted the following to them:
Vit A capsules broken onto skin doesn't do much at all except lubricate without stinging
My Vaseline Intensive Care Vit A & E are now burning when I put it on
My rask/bumps are moving down my neck past collar bones to my chest in a polo shirt V neck pattern. As well the left side of my face is now red and has minor bumps.
I re-started the retin-A cream for the past week and a bit and it is not taking away anything just yet. It is flaky and sensitive from this cream.
Naturopath said:
Vit A 1,000 IU daily is fine up to 10,000 IU for a shirt period of time should I need
Fish oil every day (I was rotating)
Vitamin C everyday 250 NOT CHEWABLE because chewable gave me cankers in my mouth!
Continue with B6 and Vitamin D daily with probiotics at meals.
Added: Zinc and Copper 1/day - as these both help heal damaged skin
peppermint oil should I need it for my stomache and bowl
Aveeno anti itch cream for use instead of polysporin
Watch: cashews and mangos - they are a part of the poison ivy family and I am already sensitive to mangos.
Taken away: Soy, I reintroduced it and viola, more rash? could it be the soy - I will test it. It was in my diet for 2 weeks and the past 3 days the bumps just keep coming. Only on my neck and chest though. **About 5 days ago 5 or so bumps on my ribs/midriff appeared - used retin A and polysporin and they died off...**
Think about: B12 injections as they can be very good for skin disorders and relaxing the body. it would be 11$/shot/wk
Also the ASCUS turned into a colponoscopy - which in turn saw nothing abnormal in my cervix - she thinks - and a BIG THINK - nothing definitive; that if my darier's is a skin disorder then it may be affecting skin cells throughout my body including the lining of my cervix.
I have started to take photos of my rash to try and log the changes. I do so at least once a week but I may do it more.
And finally I have asked for my fathers medical history and diagnosis of his psoriasis - if he had a biopsy or not as this disorder is autosomal - meaning it goes from generation to generation never skipping a line - so one of my parents has to have it or its not darier's - so I'm looking for a lineage of this disease in my family now.
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June 22 2009 Update
So I went to the Dermatologist for a biopsy with my dad - as he has Psoriasis so naturally I would have to assume he is the genetic link to my disease. the Dermatologist laughed and said "no he doesn't need a biopsy - you have the disease - he didn't give it to you! Your body made it for itself!"
WHAT?! Why would it do that?!
My brain has to theorize this: if my mom has moles, my dad has psoriasis then I have the genetic mix match of this and my body made a decision to go neither way but make up a new path = darier's white disorder?! GREAT.
So my dad was feeling much better but I was feeling lousy. The Dermo was explaining my brothers will most likely not have it. But we won't know until they are in their late twenties or early thirties. Just like me. But my kids, should I have any, will have a 50% chance of contracting this disorder. Great.
Since my last post I have had a really good reaction to the Zinc/copper. So much so that my Natural Path wants me to take it twice a day. I don't know if I can do that - its a mineral and its harsh! you have to take it with lots of food and even then I sometimes throw up. But my skin is looking much better with it. that and the fish oil is great. I sometimes take a vitamin A 10,000 IU at bed time (all with my cream from the Dermo: Retin A) and I like what I am seeing.
You can go here to see my skin results: http://www.flickr.com/photos/adriannap/sets/72157620223217212
I try to take some pictures every now and again to show myself I am in fact improving as its depressing to wake up everyday to it as I'm sure we all hate that skin regime to get out of the house...
I have also found that soy is not good for my skin nor my body in any large amounts. And white wine is going under the microscope as I had some at a party twice now and my skin freaked after both occasions - but I was at a party eating various things that perhaps I shouldn't... but the common factor was white wine. Red doesn't seem to affect it but that too will be looked at.
I haven't explored the B12 injections due to finances - but I'm still interested... Aveeno is my sanity! It doesn't sting - it is my cleanser, my body wash, my face scrub and soon to be my sunscreen - I LOVE IT! For anyone with a sensitivity this is for you!!
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July 10 2009
New pictures are up -
Since I'm now also working at the Tea Shop around the corner I have been reading up on tea and healing properties... I'm drinking a maple tea: http://www.davidstea.com/organic-maple.html which has zinc in it to help my skin and immunity. Also I have been trying this one: http://www.davidstea.com/night-out.html which has Vitamin A and olive leaf in it. Plus giving this a try for my all around health instead of coffee: http://www.davidstea.com/coffee-pu-erh.html it is akin to probiotics in a natural state - its a good cleaner of your innards and I know I need that!
talking to customers I happened to meet "Nadia" a pharmacist who got to talking to me because there was a book on the tea shop wall saying "Foods that Fight Cancer" which she scoffed at and we got to talking about how everything is connected: mind and body - what you eat and everything in between. She said I need to check out http://www.pycnogenol.com/flash/ at 50 mg once a day, http://en.wikipedia.org/wiki/Coenzyme_Q10 100 mg per day, and Omega 3's at 100 mgs twice a day.
I will look into those - and keep drinking tea! because I'm addicted already to tea so why not ones built to help me?
Still haven't braved the B12 injections...
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August 2009
If I had one thing to say it would be:
THANK YOU NADIA THE PHARMACIST! Since using Pine Bark extract or Pyncegol my rashes have all but gone away!!
I was scared because I had a vacation in LA and I didn't want to show off my lovely rash but I barely used make up and by introducing it into my cocktail of supplements I really think I have caught on to something really great for my skin!
I checked out the Encyclopedia of Nutrtional Supplements http://www.amazon.com/Encyclopedia-Nutritional-Supplements-Essential-Imp... and read up on what exactly is happening in my body that makes this a wonder drug...
turns out that the pine bark extract is a flavonoid - a PCO (procyanidolic oligomers) which means its a huge antioxidant and free-radical and works to deplete the destruction of collagen which is the support structure of skin and blood vessels in the body. Its antioxidant rate is 50x that of Vit A and E! So get out there and pick this up! either Grape Seed extract or Maritime Pine Bark - pyncegol has been branded so just look for what ever brand you trust and try these antioxidants. And research for yourself - flavonoids are what people rave about when they say Green Tea is so good for you - so look it up, its worth it!
I also found this interesting in the Encyclopedia & A-Z Guide to Drug-Herb-Vitamin Interactions....
While reading about my topical cream Retin-A :
"Severe cystic acne and disorders of KERATINIZATION, such as Darier's disease... or hyperkeratosis" it listed Darier's!! In a widely publicized book. Wow. That's a first. It says that zinc is an agent for Vit A to be absorbed, as well as Vit E. So my Vit A or Retin-A cream will work better with my body if I take my Zinc Copper balance - in other words I can't skimp out on the zinc :( I was looking for things to cut in my cocktail of supplements but it looks like the new mix is here to stay - with the pine bark! Also the PCO has no drug interactions! It truly is a miracle supplement!!
I find the pine bark can be taken whenever - with a glass of water or with food, and no where does it say that its a bad choice either way. Mean while Zinc will make me sick to my stomach and has made me dash to the lou if I don't eat enough. So beware.
Lessons learned:
Protein and zinc are necessary for retinal mobilization
Vit A needs zinc and/or vit E to work properly
pine bark is awesome. I'm taking 50 mg/day mid day - it says I can up it to 150-300 for therapy (which I have come to know as short periods of time) **I will have to talk to my natural path about this one...
Eat more dried apricots, chili peppers, kale and sweet potatoes, cherries and paprika - so says it for skin disorders
Read up on more Flavonoids like Quercetin as its an anti-inflammatory... it can be found in fried onions (yum!)
Look into introducing CoQ10 and Vit E
On a side note - I have purchased this awesome cookbook: http://www.amazon.com/Baking-Agave-Nectar-Ultimate-Sweetener/dp/15876132... because I find sugar makes my rash appear more pronounced (and it gives me headaches...)
**be warned - agave makes your intestines move and shake and you can't have too much at one time so I would recommend splitting the agave needs with buckwheat honey which was also recommended to me by "Nadia"
best wishes and let me know if you find anything fantastic!
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Nov 2009
It has been a whole year since I started this journey to find out what was wrong with my skin and later find out I was diagnosed with Darier's Disorder.
I can thankfully say I have a therapy that works for me and my skin is mostly clear of any signs of the disorder. Yes, I get flare ups when I'm eating improperly, overly stressed, or its that wonderful time of the month (eep!) but really day to day life is no longer filled with tears or rashes that ache.
I want to take a moment to thank everyone - who I have met along the way that offered support either in hugs or medicine, treatment or just a shoulder to cry on. Also to those I have not met or met yet that I hope this blog speaks to you and allows you to seek out treatments that work for you.
I have met several people living with Darier's from this blog and I hope to continue to do so - not that I like hearing you too may be afflicted but that we can be a community for eachother and keep ourselves informed and also encourage eachother to help ourselves find a way of life suitable to our own needs especially when faced with a genetic disorder.
Thanks again everyone.
Nothing new to report other than I'm in a play (yes I'm acting again thanks to skin that will again allow make up artists near it!) and I have slowly gaining my momentum and confidence that was dashed one year ago. *insert big smile here*
What I'm taking now:
b12 b6 100 mg each day
vit d 1000 ui each day
Maritime Pine Bark Extract each day 30 mg
Alternating:
zinc/copper 15 mg
omega
vit c 50 mg
Calcium supplement
probiotics
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Darier's Disease
I posted information on General Discussion maybe you would like to refer to it.My email address is sandy.b1@hotmail.com Look forward to hearing from you and we can compare our treatments with each other.Take care Best regards Sandy
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I too have Darier's Disease
I too have Darier's Disease and I am going through an outbreak at the moment which is my worse yet. I am 36 years old, had my first symptoms at age 13 but diagnosed at 22. From your pics, the pattern of mine is almost identical to yours and those pics could easily have been of me. I would like to email you rather than talk over the forum. I have tried so many lotions, creams, pills- we could compare notes. If you would like, I would email you. Thanks.
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of course!
you can email me at adriannasemail @ gmail . com
hope to hear from you! and I'm posting some great stuff I have learned right after I click send on this!
all the best,
Adri
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December 2009
A new photo is up on my flickr: http://www.flickr.com/photos/adriannap/4192307445/
Still in the clear! I do have occasional bumps but no rash like I had last year. I remember it being painful to wear anything with a collar - but that I wanted to so I could hide the rash :( This year is different! And I hope it is with you too!
I keep getting emails - and I love it! I am so thankful to be able to pay it forward! If you have Darier's the best advice I can give is keep trying - keep reaching out for more answers because it is such a little known disorder and doctors can get flustered by the lack of documented cases. I also suggest taking down your stress levels as stress will only make you flare up. I know I know, it's the motto for life right? Destress. But yoga, a good book, a comedic movie, a healthy dinner - anything that makes you destress or puts you in a relaxing mood will help! So around this time of year it may be that the bumps flare up because we are eating overly sugary foods or that we haven't done our xmas shopping yet - all stress. At the end of each day allow yourself to be relax. "Leave it at the door" as many directors say; it won't be there tomorrow so let it go.
Now I sound like a guru or something. I hope you can take from this blog what you will. It was also a way for me to destress. A way to let me let go of my frustration with my skin.
So Happy Holidays and here is to a rash free New Year!
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January Winter Blues
I have started having email conversations with some of you lovely people who have read my blogs over the past year. A Mary Lou writes that she has intel about calcium and Darier`s. I hope she can log in soon to talk about it as I think I need more information about it before I blog about the correlation. But I am intrigued as I have always had a strong reaction to too much calcium in my system - to the point I get zit-like peaks in my skin especially on my face (gee where did my Dariers first appear?) and they slowly disappear. I cant attack them like popping a zit or wash my face enough, and it is definitely around calcium as I have logged it in my books. That and Vit. C I don`t get along great with but I must take supplements because I dont eat/drink enough of them.
My back has now been a canvas for Darier`s - no picture as its hard to photo your own back! But it was a light inflammation due to what I can only conclude is from a holiday season of sugary foods, too much alcohol (which is terrible for my Darier`s as there is dehydration and sugar jammed into a lil wine glass) and such stress dealing with family and recent events.
I also started taking my clear skin for granted and lessened my regime of pills. I am back on Pine Bark everyday and B, D, alternate C, Omegas occasional, and Vit A - which ran out in December and I just shrugged about it. Mistakes were made. I am just thankful it wasn`t my face and neck that blew out of control.
So I`m back to yoga and exercise. Water and supplements daily. I also still enjoy tea - but for every cup of tea I have a cup of water as it can sneak away hydration from you and caffeine is a fiend as well.
So yes - the moral is - DO NOT fall under the spell that your disorder is just going away. It is not. Stay on top of your own health and take care. It is work. But the reward is totally worth it!
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March 1 2010
Like I didn't already know but: I have had a relapse of symptoms but its funny how I can pin point where it stems from since I have had such a good study of myself and all the effects "things" have on me...
I drank white wine in abundance at a friends dinner party. I have forgotten to renew my supply of pine bark for 5 days (life got busy!), because life is busy = more stress, I ate butter by accident (thanks restaurant that lied to me) and my digestive system has been stressed because of it.
All these things led to me getting a break out on my chest and back. Interesting how it didn't reappear on my neck. Though I have be noticing if something is scratchy or its too dry my skin goes red very quickly and stays red with bumps. I would say more so than most. It is the winter time when its much dryer and the cold winds don't help - as Mary Lou was saying above - Winter is my worst time of year.
The lesson learned: don't skimp out on Pine Bark or whatever works for you. AND remember that everything is connected so do yoga or meditate or watch a funny movie - stress is a major factor in this game.
Hope you are all doing well ~ until next time!
Adrianna
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Pine Bark
Adrianna,
I have tried this for almost 7 days and i have notice a small improvment in the rash on my neck and the rest of my bosy seems to itch alot less, I found an over the counter cream with pine bark extract in it, it was 26.00 us dollars so i didn't buy it but my mother surprised me with it today, i will post my results after a weeks use. I have found your blog very helpful and it gives me renewed hope. Thank You for saring.
Cindy
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mary lou Hello, My surgery
mary lou
Hello,
My surgery went really well and it had some interesting results for Darier's. They put me on mega doses of vitamins two weeks before the surgery and they contained B6, B12 and the usual D,A,E,etc. Granted it was in high doses but what a difference it made in my skin. The surgery also included lasers and to my surprise the Darier's is now not visable in those areas as it was before. I am going to wait to pass judgement on if the laser was the reason. I am staying on a lower dose of the vitamins to see if they continue to help. They come in a pack distributed by doctors, it is called Vitasurge. My skin has never looked better. I am also using a line of skin products called Revision. The doctor recomended them and they are so far great. But as we all know time will tell. I am still using Aveeno as my daily lotion. I take short warm showers and immediatly put the Aveeno (oat essense) lotion on all over. If I do that everyday without fail things are much improved. Like you say, you have to manage it everyday without fail. Can't wait till summer!
Mary Lou
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SO good to hear that your
SO good to hear that your surgery went well AND that you had some bonus side effects! I find that the high doses do well for my skin too - I still have to see a Natural Path to see if this will hinder me in the long run though... Have you talked to a sustainable amount for skin therapy?
I have never heard of Revision or Vitasurge but thank you for letting us know ~ I will look into them for sure: taking individual doses can be really annoying at times but the results are worth it...but if there is a compact version of what I take daily...
I found the note the "Nadia" lady gave me with the dosages she recommended that finally led to my remission of sorts - I am nervous to call her and tell her that she is in fact my own personal goddess! I'm thinking of giving her flowers or something. What would be better is if this site hosts a get together in TO I would love to call her and have her speak about what she has learned as a pharmacist. She is obviously very skilled.
Thanks for sharing and I hope to hear more great news from you and everyone else!
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mary lou Hello, I hope this
mary lou
Hello,
I hope this finds you feeling well. The weather has turned warm and I am so glad for that. Still doing well from the surgery. I am still taking the vitamins and using the products that the doctor recommened with good results. I would love to have Nadia at least correspond with us. I am not sure if that is allowed by her company due to regulations (malpractice). As I have said before knowledge is power. The name of the vitamins is VITAMEDICA, I had it wrong on previous post. I do believe the relationship between laser use and Darier's clearing is there but would like to see more research information from doctor's. I hope we all have a free and clear summer!
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Happy sunshine in a sun hat to you too!
I just looked up that line of vitamins: VITAMEDICA; http://vitamedica.com/ is it the Healthy Skin line he recommended? It looks interesting and promising if you are having good results!
I just had a lovely letter from Maria and through our correspondence I turned this up:
http://www.tomsofmaine.com/products/deodorant#/?page=Deodorant it's a deodorant that my friend swears by and could be good for sensitive skin such as ours. I have yet to try it as I'm still ok with Ivory's "sensitive" skin line for under my arms.
Also a reminder that if you are in Ontario you can always call Telehealth 1-866-797-0000 TTY : 1-866-797-0007 (now they will probably be mind boggled by our story of Darier's!) but you can talk about mixing pills/vitamins/supplements and how to deal with the sun effectively in your own way. What works for me may not work for you! So keep talking and asking questions until you find your answer.
I also saw an ad for this: a sunblock spf 100!! http://www.helioplex360.neutrogena.com/?utm_source=n_com&utm_medium=refe...
(theres even a click link for a coupon) I think I may try it - I have to buy some anyway - though I do like Aveeno's spray 45 or 60.
with a follow up from Oprah ;) http://www.oprah.com/health/The-Benefits-of-SPF-100
And don't be lazy! I have been drinking summer patio drinks already and the sugar is taking it out on my skin - and buy some new sun hats, there are some great ones at Winners right now in Canada - now I have 5 :) My fav is now a huge tan and white floppy that extends to my shoulders! What's your favourite?
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Calcium
mary lou
Hello,
I hope the summer is off to a good start! I had a bone density test last week and it showed signs of pre stages of osteoporosis. My doctor started me on calcium and much to my displeasure it has caused my Darier's to flare a little. Has anyone else had this experience? I am seeing her in two weeks and have stopped taking it to see if the flare up goes away. I was doing so well up until that point. Oh well so the journey continues!
Mary Lou
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