Saturday, October 2, 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 croping 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!
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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

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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

27 comments:

  1. I have been struggling with dariers disease since I was 12 years. I am now 31 years old and I had never had a brakeout on my entire face and I am in so much pain I been to my primary doctor and the just give me benadryl and vicodin and tell me they are referring me to a dermatologist but it has been 3 weeks and still my referral has not been approves.I am so tired of all this pain am face is raw and it hurts so bad if I use cetaphil cleansed to wash my face.Help

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    1. I've had darier's since I was about 12 too. Try taking that pine bark extract it works wonders it just takes some time. Grape seeds also have the same active ingredients in them. I did a little reading a while back and there's something about this disease with not being able to handle calcium in our skin properly so I went out and bought this cream by St. Ives called mineral therapy that had calcium in it, when I put it on it was instant relief from the pain. There is also something about silicone and our skin and it helping the production of calcium in our own skin. I've tried some silicone moisturizer and it definitely does something to the area effected but I'm not sure if it makes it better or worse cause I'm usually trying other things when I use it...don't put it on your face though it makes area more red for a few days and irritates it a little but it seems to go away a bit if you just apply it once a week or so....again haven't experimented with it enough.

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    2. I don't know how these comments passed me by for so long - but thank you for sharing your story here.

      I hope you have found treatments that work for you - and if you did please share. As you can see this disorder is not widely known or published so it's hard for us to get a straight answer. Whenever I go to the dermo it's me telling her what works :/
      All the best to you and yours.

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  2. Hi its been a great help reading all the comments and treatments suffers are finding effective. I was diagnosed with dariers in march 2013 by consultant (lost count of how many ive seen) had biopsy today to confirm but I aslo suffer badly with bowel pain and bloating. I believe my skin condition & stomach pain are linked maybe celiacs disease but waiting on stomach biopsy to examine that possibility. At moment im been treated for darriers.! I followed Adriannas treatment of vitamins & hypoallergenic diet and I was completely cleared within 2wks nothing has ever worked better. Continued diet for 6 wks and slowly introduced food groups and by the time I was back eating normally my symptoms reappeared:( I believe its food related wheat & sugar coffee been a major player) dermatologist dismissed this and continues to prescribe me creams -fucibet and diprosalic which aggrivate and infect my rash!! Ive been suffering with this since I was 12 which started with scalp psoriasis & eczema on elbows and the odd time an itchy spotty rash on neck which used to come & go without treatment so I know how most creams react with my skin. Why dont they listen?? In past 5yrs it has gotten much worse rash now between chest and neck covered in spots and scalp very scabby nails aslo split with calcium deficiency.Im at my wits ends. My eldest child 13 also starting to show similar rash . Living by a hypo diet is extremely difficult mainly living on sweet potato brown rice & salmon. I will go back on it after my stomach biopsy in jan. Lost a ton a weight too so that will help with detox after crimbo.Until then I need the wheat and gluten to see if its celiacs disease. Dont know which is worse either way a serious change in eating habits in on the menu!

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    1. Sorry for the late reply but - yay, I'm glad to have helped!
      I hope your biopsy this past January helped give you more info too.
      All the best to you and yours

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  3. Hi my name is Emily. I have had darier's since I was about 8 and so has my mother. Our skin is terrible now. She has it in the creases of the back of her leg and mine is all up and down my arms. It is incredibly painful and hurts to stretch out my arms. I am super excited to try pine bark extract and the hypoallergenic diet. Hopefully it will help better than all the other things we have tried. At this point we are just trying anything because nothing can get it under control. Thanks for all your tips and ideas. Things can only get better from here!

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    1. Hey Emily! Pleased to meet ya! I hope some of the trial and errors here help you and your mom out. Let me know what works and what doesn't, and anything you may try too - you never know what's going to be the golden ticket :) mine so far is that Pine Bark which I hope you have tried.

      All the best to you and yours :)

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    2. Hello everyone! My name is Morgane, and I have been suffering with Darier's disease since I was 12 (I am almost 36 now). The disease has evolved over time, getting worse as I have gotten older. There was one short period about 5 years ago when I had mono when my skin was super clear. But afterwards, it changed and instead of having flare ups a few times a year or so, the flare ups are every day. I have tried various treatments, mostly topical. I had one cream from the French company La Roche Posay that worked somewhat for a while, but then stopped doing anything, and in any case has been discontinued. Vit A topical creams made things worse, so I stay away from those. I have tried the pine bark extract since I read about it on this blog, but did not see any change in my skin. I will try again however, with supplements from a different brand. Adriana, could you tell me which brand you purchase please? I read about hemp oil used orally and topically last year and tried that as well, but no luck with that. I have been wondering about laser treatment, but I am not even sure how to get more info about that. Anyway, it's nice to have a place to talk about this and everyone here seems very supportive :)

      Kind regards,

      Morgane

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  4. Hello , I was also curious to know the name brand of the Pine bark extract you take ?

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    1. I posted it and the other things I use over here: http://fightagainstdariersdisease.blogspot.ca/2013/10/pine-bark-my-best-friend.html

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  5. Although I was spared, the closely related disorder Hailey-Hailey runs in my family and I actively participate in an online HHD group.

    Earlier this year, I ran across a case study reported in a European dermatology journal about a novel treatment for HHD which I thought I should pass on to folks with DD since the mechanism behind the treatment should make it have the same effect in DD as it does in HHD.

    The patient in the case study was attempting to treat her arthritis by taking 70 ml of Magnesium Chloride Hexahydrate (MCH) in a concentration of 33 grams/liter and noticed that her HHD cleared up. A dermatology group at the University of Ferrara looked into this and found that this was probably working by increasing intracellular calcium levels offsetting the problems caused by the defective calcium transport receptor which is the underlying problem in both HHD and DD. Several members of the HHD group have now started this treatment and all are reporting similar success. It seems likely that over time, the treatment will rebuild the skin to a healthy state.

    All have reported minor flare ups which resolved quickly, but they have decreased in frequency the longer they have been taking MCH.

    Finally, the amount of elemental magnesium in this treatment is roughly equivalent to the recommended daily requirement for magnesium so should be very safe.

    We have been discussions with several prominent dermatology researchers who have previously done studies in HHD and DD about organizing a formal US clinical trial. We are also in discussion with a national compounding pharmacy about making MCH available with a prescription from your GP or dermatologist. I will post further details as they become available.

    If anyone would like a copy of the study, please email at fadd(at)squeakycat.com and I can send it to you.

    Here is a link to an abstract of the study:

    http://www.ncbi.nlm.nih.gov/ pubmed/25430969

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  6. I am 52. I've had Darier's for about 40 years. The only thing that consistently works for major breakouts is Accurate. I have 4 daughters with no sign of the disease. First trimesters of pregnancies were awful...major flare ups. By the second trimester, rash was beginning to fade. By delivery, rash was almost gone. For minor flare ups, calamine lotion or diaper rash cream works. I always avoid the sun and sweating. I had a hysterectomy two years after my last child...I was about 33. Since then, outbreaks have dramatically decreased. I've lived with this for 40 years...take heart. For me, it's been a journey of trial and error home remedies and Accurate. I seem to need 20-30 pills if Accutane every 2-3 years. Darier's is what I have, not what I am. Good luck to you all!

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    1. Thanks so much for sharing your story! I am intrigued that your outbreaks have gone down since the hysterectomy - I notice where I am in my cycle is most definitely a cause for my flare-ups.
      Best wishes to you too :)

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  7. Wow, I must say it's nice to know I'm not the only one suffering with this disease.
    I was diagnosed with Darier's Disease in 2013 after suffering for about a year with these strange skin rashes. The doctor had misdiagnosed me with Psoriasis and it wasn't until they did a biopsy that came back positive for Darier's Disease that we finally knew what was going on.
    I am 39 years old and this started for me when I was 34/35. I was completely stressed out at my job and hated going to work everyday. My husband and I went on vacation and after coming out of the shower I noticed a strange red spot on the back of my neck. The spot both hurt and itched at the same time - weird. After a week or so the spot disappeared and then out of the blue one day it showed up again in a different location, but this time it was bigger.......and now this stupid stuff I swear has a mind of its own and will pop up anywhere and everywhere and sometimes in different locations each week. For example, last week I suffered horribly with it on my lips and this week it's not there. One week I will have it on my eyelid and the next week it will have moved to a different area on my face.
    The places where it ALWAYS is, is....Scalp, neck, back, chest, hands, sides of my face, behind my ears, armpits and around my groin.
    Miserable, absolute miserable disease to live with on a consistent basis. I can't remember a time that I didn't itch all day everyday.
    I use a cortisone ointment that helps, but that's it - helps.
    I was wondering if food or a diet regimen would help the situation any. It is hard to loose weight as we don't want to sweat or get out and exercise as to avoid exasperating the issue and making things worse.
    The best way to describe the way this feels is that it acts very much like a sunburn, in the way that a sunburn itches until you scratch it and then it hurts/stings, and then after awhile it peels.
    My wish is that they find a cure and that we no longer suffer.

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    1. Hello,

      I noticed that my earlier post are on this website. It is a day to day disease, some good some not. I have been to all the best doctors and have tried many treatments. The best advice is to stay out of the sun as much as possible, stay away from dry climates and do not use any scented lotions or soaps. I take soriatane and that is the only thing that truly helps. I have to take antibiotics sometimes when the flare ups happen. There is no cure to date. I have tried lasers, photodynamic therapy, ointments, etc. Staying calm, wearing cotton clothing and low sugar intake seems to help. Stay strong and know you are not alone.

      Mary Lou

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    2. Soriatane was messing with my g.i. and making me depressed. I'm glad it's working out for you. I have been sugaring out lately, have to cut back. Staying away from dry climates, not sure about, because humidity seems to exacerbate my condition. When I was in Vegas, with no bugs, and no humidity I seemed to do better, but that was just a week.

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  9. Blessings to all for sharing. While I was diagnosed and suffered most while in Las Vegas in the late 1970's, I later moved to Oregon and then the North Shore area of Lake Tahoe with some improvement but also flareups. My best stretch of minimal complaints happened while living along the Pacific Ocean in Seaside, Calif., from 1992 to 2000. Remembering other problems before and since make me aware of the viability of some doctors' observations that climate can prove an advantage. I have felt lucky even though suffering more lately and will try checking with my regular doctor for a possible dermatologist recommendation. This condition seems so rare that we may just need to pray we can find controls. Thanks to everyone for your posts.
    Brian Liebenstein in Tigard, Ore.

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  10. Okay I just read where you are diagnosed but I was really surprised because I was told it was genetic and that they could only tell through blood testing or a swab.... I was surprised to hear that your parents didn't have it but maybe it was passed down through the grandparents. My baby girl almost 13 was diagnosed a few years back, not many issues into the past two years puberty stress sixth and seventh grade. Children telling her that she is ugly being bullied and having other related issues. She had seizures but thank goodness they were pseudoseizures and that's how her body was dealing with the stress of being bullied. You can have seizures unknown reason having darier's. I just started my child on prenatal pills and hope that it would help and now I'm reading everything that you guys are trying which tells me my gut is taking me in the correct direction. I so hope that I can keep sharing and reading as well as sharing this with my daughter. Thank you

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    1. It's a genetic mutation and both my parents have skin disorders just not Darier's. I had a biopsy done on my neck and still have the circle scar about the size of the top of my thumb sitting there.

      I am so sorry to hear about your daughter. I had mild Darier's as a child so it looked like a rash and yes kids can be cruel. It took until I was in my 20s to form into the scaled sores you typically see.

      I made a deal with myself that I would try to deal with my DWD in the most financially viable option: which as it turns out is the natural way. I will likely have to result in the medication as it worsens due to getting older/elasticity of the skin and all... but until then I am trying diet, therapy for stress/anxiety, supplements and creams all outlined in my online Darier's diary right here :) I hope you and your daughter find some of it helpful.
      I would highly recommend complementing the medical advice with naturopathic advice or even a dietician to make sure your daughter isn't eating anything that is stressing out her system (like I had no idea I was allergic to carrots?!)
      Thanks for sharing and all the best to you and yours.

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    2. Hi Michelle,

      I was finally diagnosed at 12. I was bullied I was called snake skin, crusty, and yes ugly many times. I am happily married and have a sixteen year old, who doesn't appear to have the disorder. I can tell your daughter it does get better. Taking care of yourself is key. I am still often that insecure little girl, it doesn't go away, but it does get better. Hang in there and know you have support.

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  11. I have had Darier's for 63 years. I got mine from an over exposure to radiation when my mother was pregnant with me. There are about 10 of us who got it that way. We all lived in the same area and the machines were WWII surplus and I guess faulty. Have tried everything from complete laser resurfacing(5 times) I was the first person to ever get Accutane. All sorts of natural "cures" from mutton tallow to cow urine scrubbings, a diet of just plain oatmeal 3 times a day-nothing else, mega doses of vitamin A 750,000 mg a day. Soaking in a tub with bleach and cold water. Even those tiny fish who eat dead skin. All the money I've spent I could have a Lamborghini. So, I have a great dermatologist who controls the flares with antibiotics and Tacrolomus cream which kinda works. Good old Noxzema helps and watching what I eat-oodles of allergies, so it's easy to avoid stuff. DD is a b-itch.

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    1. Hello Charlene, thanks for the visit and read! And yes, DD is a bitch :( I'm sorry you have had to deal with this terrible disorder for so long. I internet fist bump you in solidarity - I hate all the allergies, all the Lamborghinis you should have in your garage, and all the sushi you should have been able to eat instead of lame oatmeal. Thank you for sharing and I hope something from this blog helps you in in feeling even a bit better. Are you in the Facebook group? There is a lot more talk about medicinal therapy and yes the bleach bath has come up a few times.
      I hope this finds you smiling, despite that bitch of a disorder

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  12. it was really great reading all of this. I was diagnosed with dariers at age 12 and im 35 now. ive done creams, ointments, lotions, oatmeal/teatree baths. nothing really seems to soothe and ease the pain when a flare up happens. Reading this does help though. I cant even describe the pain sometimes and its nice to know some people know how you feel. I wish I could try the pine bark extract but I am allergic to pine so not 100% sure that would work. : (

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    1. Definitely talk to your doctor! But perhaps my latest blog would be helpful: http://fightagainstdariersdisease.blogspot.com/2018/09/magnesium-as-treatment-article-and-some.html if youre allergic to pine maybe Magnesium is the way to go. I just upped my dosage from 100 mg to 200 (one 100 mg pill in the morning and one at night) and I'm finding no side effects and my trouble areas do seem to be lessening.
      Good luck, and I hope this finds you smiling despite the terribleness of this disorder.

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