End of May update: Summer is coming

 Update: May 27 2022

Life being on fire is part of life, right? We can't control the fact that we are living through an apocalypse, nor can I control the weather, or how other people will react to my actions. all of these things play a part in our mental AND physical health. I think that's something that many people don't realize: you can't just take a pill and think it will cure everything. 

I have found that having Darier's or Keratosis Follicularis is something that you have to look at the WHOLE picture that is your life. What are you eating? What are your stressors? What are the products that you use on your skin and hair... 

The anti histamine diet reminded me that food is a huge contributor, at least for me, when it comes to flare ups and overall skin health. My skin is looking pretty great post diet, but also I reintroduced many triggers from that list (namely gluten, peanuts, and shellfish) with little reaction (thank goddess) but I did stay off of soy milk as my go-to grab, I am now on oat milk and almond milk for coffee and tea and when cooking. 

My face with no makeup, just moisturizer (and not enough sleep!) is very clear, I think the OMEGA and Primrose have been helping my mask wearing irritations as well. Less red overall. 

Notice the Keratosis is minimal and is light pink, not really raised or bumpy, not irritated,

I really like the body wash they suggested: CeraVe has a whole line of products I just might need to get into after using this:

I was also given this advice on follow up: 

For skin:

Ground flaxseed: please consume 2 tbsp freshly ground flaxseeds each day. Add to meals or mix and drink in water. You may divide the dose to 1 tbsp twice per day if needed. Ensure you are drinking enough water throughout the day as increased fibre consumption from flax may cause constipation.

If purchasing flaxseeds whole; grind 1/2 to 1 cup in coffee grinder or blender. Freeze remaining amount to be used throughout the week. If purchasing flaxseed powder, ensure it is freeze-dried and stored in fridge/freezer. Flaxseeds are susceptible to oxidation from light and heat.

We recommend that you discontinue taking ground flaxseed should you experience any adverse effects.

Can be found at grocery stores such as Walmart, healthy planet, & or whole foods.

Sunscreen: unfortunately the Supergoop sunscreen we discussed is not sold in Canada. Please see this other great alternative:

La Roche Posay SPF 50 - found at Shoppers: https://shop.shoppersdrugmart.ca/Luxury/La-Roche-Posay/Anthelios-Mist-Spf-50/p/BB_3337872420030

I have yet to introduce these but am happy with the recommendations my naturopathic doctor has given so far. now I just need to find the flaxseed and spray. 

What's working for you?

Day 18: on the anti-histamine diet

 Day 18: on the anti-histamine diet

I hate it. Not being able to have peanut butter and kombucha, who knew that I was so attached to certain foods. So far I am eating like a horse, as my best friend Val pointed out: oatmeal, oat milk, apples, apple butter, fresh salads... Ya. I don't like this horse diet. So I decided to check pinterest for anti-histamine recipes...

I tried this one and even my fiancé ate it with me, and we laughed that it was very thanksgiving in flavour: https://drbeckycampbell.com/anti-histamine-turkey-kale-sweet-potato-skillet/ (I added rosemary and mushrooms though...)

After taking the omega and primrose with lunch, I feel bloated around 3 pm and not so hungry for dinner.

I found sweet treats to eat on this diet! ShaSha Spelt Ginger Snaps 

(all the other flavours don't pass the test)

And a check in: light pink dots, not itchy, this is the best I can hope for on the regular. But I'm daring to dream CLEAR skin so here's hoping this diet and these new supplements can do that (and be ready in time for my wedding and the low back dress I have for October 2022!

Darier's White Disorder and wearing COVID-19 face masks

I have been seeing some people talk about how they hate that their new mask wearing routine is making their DWD freak out! I have been having a good reaction to Kiehls Ultra Face Cream and SoonJung creams (as mentioned in a previous blog). It feels nice, no burn, and has really helped create a barrier to the friction of the mask.

Here is more on them:

https://www.etudehouse.com/int/en/index.php/collections/soonjung.html


https://www.kiehls.ca/en/skincare/category/moisturizers/ultra-facial-cream-622.html



And from that time I talked about Black African Soap: http://fightagainstdariersdisease.blogspot.com/2020/02/trying-african-black-soap.html

And that time I talked about trying Korean Beauty Products: http://fightagainstdariersdisease.blogspot.com/2020/01/while-in-korea-beauty-and-skin-products.html

IT WORKS! An Update on how it's going

Update: all the changes and tweaks and ongoing therapy is working itself out! I'm not "cured" or anything but it is a helluva lot better than a few months ago when I had to hide under scarves and cry from the pain...

Right now this is what it looks like:

 

Not too shabby! Of course the pink bumps are never going to be completely gone (or never say never? *hopeful*) but this is so much better than the red rash and open weeping sores I had this winter.

SO! What is my line-up of therapy and goods to bring my DWD under control? I'm so glad you asked:

-no cow dairy
-the least amount of sugar
-lots of water
*I do drink coffee, tea, and drink cider and wine but always in moderation/occasionally






Daily
-50 mg Pine Bark Extract pill
-Vitamin B (either B2 100 mg or a B100 complex) pill
-15 mg zinc pill
-100 mg magnesium (doctor said it will help with my headaches)
-lavender pillow mist + frankincense/lavender oil mix on pulse points (great for anxiety and to sleep)
-meditation 5 mins (needing to get this up to 10 in 6 months)
-Vitamin A 10000 IU pill (at night)
-Vitamin A cream (on affected area at night)
-SPF 15 or higher (depending on season and outdoor activity but ALWAYS at least 15)

Sometimes
-Multivitamin
-Vitamin D (on cloudy/stay inside days)
-probiotics
-CBD pills for anxiety; situational
-Germolene for spot treatment (when the pink bumps become redder)

So there ya go! That's what I'm doing, remember to talk to your dermo and/or doctor or health care professional when trying new things - and on that note what is working for you?

I haven't had to use Germolene in over a week! And I am glad of it, this stuff is potent and shouldn't be used daily.

I am drinking soy milk instead of any other dairy alternative so I can try and keep my hormone levels up too, at least that's the idea - I don't know if it's helping at all but tofu and soy milk are a part of my diet since I left birth control for an IUD.

I hope this helps you on your journey to wellness!

What Works vs What Doesn't

What Works vs. What Doesn't  (...for me anyways)

So I saw Bio Oil on sale at Shoppers Drugmart and decided this was the say I try it. It was hyped a few years ago as "the thing" for skin ailments such as scars, stretch marks and dark spots and some skin issues.

BAD IDEA

I have never felt my skin on fire or itchy as much as I have on Bio Oil

I took pictures of how it got worse and worse but instead of posting that, which isn't helpful, I decided to do a round up of what IS WORKING for me..



I also have fallen in love with my oil diffuser and essential oil therapy... I have been chatting with a friend who does oil mixology and the top skin soothers are frankincense and lavender. I have those oils 7 drops each in coconut oil applied by a roller vial like this:

So far it's not making it worse nor making it better but I like the way it makes me smell and feel so I will keep on trying it on my pulse points and behind my ears instead of perfumes.

So there's my overview, combine the above with low sugar intake, no dairy, low red meat, low/no cured meats. I do eat gluten and I do like wine and cider every now and then, but no beer, when considering my diet with all the above.

And I have to mention that I am on a low hormone IUD for the first time in my life and it is making my skin FREAK OUT so that is why I am trying all these things because I'm impatient and want a fix NOW instead of waiting out the hormonal flux that is happening now that I am off birth control and with that the regular hormones that came with it from the pill...

I also joined a group on facebook!  Maybe it's for you too? They talk a lot about the medical side of Darier's which I soon might have to look into as I age and deal with a loss of supplementary hormones.

Tell me what is working for you!

Trying Something New Follow Up: Saje Restoral Ointment results

I have some sad news, my experiment did not go well with my last post about the Saje Restoral Skin Ointment  it didn't work for me, I tried it for a week, applying in the morning and at night. Here is the day by day:

Day 1


Day 2


Day 3



Day 4


Day 5


...and then I stopped. My skin was getting sore and irritated and hurt. So I stopped and called this a failed experiment. I couldn't make it to day six :(

I went right back to Vitamin A Cream and BOOM it was better in a few days with my pink dots rather than blistered sores like you see above.

I'm sad that it didn't help; at first it felt like it was drying out the affected area but it was really just irritating it and making them open up and be sore and weepy, which made me sore and weepy.

You never know, it may work for you but for me it just seemed to make it worse.

What creams and dietary goods are you trying? Anything new?

Guest Blog: Emails from a Reader

I think it's important to keep the conversation going about what we are trying and doing to deal with DWD so after asking permission, I have the emails from a reader and myself talking about what to do around a bad flare up. Please share what you are trying and doing, success and fails are welcome - we all need to learn and lean on each other!

I just finished reading your blog.
I am reaching out to anyone who can help me at this point with my DD.
Just like you, I have and have always had it, on my neck.

This is my second worst break out and I am just so scared of another staph infection, last one turned into sepsis and landed me in hospital.

I hope to hear back from you.I have been very lucky in the past week. My roaccutane has kicked in and looks to be working, at least with clearing up weeping scabs and infection. It's still very red on my right side of my neck. Which has always been the side that breaks out and gets infected. Luckily I see my specialist in a weeks time and she can help me out that little bit more. 

What has and hasn't worked for me? Most of the time nothing works for me, I have tried several ointments that lead to a weeping scabbed up mess and often bacterial infections. A few years back when I had my last severe break out I was on several antibiotics and was lucky enough that they actually cleared it up, although I think that had more so to do with the infection rather then my dariers. I am now testing roaccutane, which has cleared up the left side (thank goodness) but cutting out dairy stopped the itch and burning I was getting.

My break out was caused by hair extensions. The hair extensions contained latex and other harsh chemicals which made my skin just break out. I have fortunately cleared my scalp, but am left with an unsightly mess on my neck. I won't lie, I am embarrassed. 

--

Ho man, that sounds awful! 

Have you tried a nutritionist or something if the like? Tested for allergies/triggers? I found most of the topical creams and ointments to just soothe the itch but not actually help or deter more breakouts and spreading. 

Again, no Doctor here but... I haven't done it yet but B12 injections are supposed to calm out your whole body and skin, or CoQ enzymes supplements- I haven't gone this hardcore as I'm trying to wait until I get older as I thankfully just have patches here and there and I don't find I need a full blown therapy past my diet, vitamin A cream, vitamins orally, pine park, zinc, and knowing my triggers. Sure I always have red spots but they are rarely itchy, weeping or scaley. 

Plus there's that new therapy mentioned in one of my recent blogs you might want to try with your specialist - it's new so it's likely expensive though :( 

--

I have tried a nutritionist and had not so much luck with that either. But I did find that cutting out dairy, sugar and meat went a long way with clearing it up on my scalp.

So far I have found that deep fried food, alcohol, perfumed soaps and lotions, wool, sunscreen and certain spices like chilli trigger my skin and leave it scabby and sore.

I don't mind at all if you post what I have had to say on your blog. ️ I have found that using just QV has helped me, no other brand of body wash or lotion has done much for my skin. 

--

So there you have it - diet has been an issue across the board for us so that's a good place to start is with a nutritionist and allergist and family doctor.

Thanks for sharing and if anyone wants to write a guest blog please just let me know!

-Adrianna

Flare Ups and crying.

Sometimes I just want to cry. Lately my skin has been so bad that it has spread on the chest and upper back to red angry spots that burn consistently, it's like a sunburn: it itches and aches all at the same time. 

These photos do nothing for how red it is and how much it's taking over my upper body. Most of them are sores rather than the hard chapped version, and very big rather than the small pink dots I'm used to. 

Thankfully it is still off my face (phew) but I'm beginning to worry that it's getting worse. 

More of an archive for how my DWD is behaving - I don't really know what to do. I think it may have something to do with the fact I did a gym class and the poor ventilation in the room made me sweat buckets which always triggers my skin into angry mode - and I have been stressed out about an upcoming project. But really? This is the way it is now? I have to wear my stress on my skin so openly and painfully??! Not. Cool.

I also blame the fact that I can't find a Vitamin A cream that has nothing else in it, my go-to Life Brand is getting harder and harder to find. The Jamiesons one has sugar in it and smelly crap that irritate my skin. Do you have something that is working for you?

I will up my water intake and go back to meditations and double my pine bark and Vitamin B but... I don't want to go on an elimination diet again and I don't want to stop drinking alcohol completely again. Ugh. Just ugh. And sadness. 

I just want to feel normal.

I have a tough post to make here.

I recently got an email (thanks for those by they way! Always happy to connect!) that ended with "I just want to feel normal."

I can't help you with that.

What I can do is help you learn from my mistakes and triumphs - but ultimately only you can find your "normal" and I put those in lil quotes because I also don't believe in normal. That word is loaded with baggage so I urge you to find what makes you YOU and you happy.

Y0u can help yourself by seeing your family doctor, then I would highly recommend finding a Natural Path. I had a great experience at Robert Schad Naturopathic Clinic here in Toronto.

Under the recommendations that the above parties give you I also recommend cutting out triggers and allergens like:

-alcohol
-high sugar intake
-cow dairy
-whatever makes your skin (and stomach) crawl when you eat it

I also recommend using gentle and natural products like:

-Perfume free moisturizer (I love the Aveeno line or their knock offs + I live off of Life Brand Vitamin A cream.)
-Perfume free laundry detergent
-Moisture rich shampoo (I'm really liking Rosemary Mint by Aveda) as less crap in your hair = less itchy/scaly skin on my head and neck.
-ditch as much makeup as possible as it only irritates the skin, but if you have to I have been having a good time with Cover FX for hiding bumps and redness.

I also recommend asking about vitamins. I take a women's multivitamin + Pine Bark Extract + B complex + D, and sometimes Zinc + Omegas + Probiotics.

It's a bit overwhelming and I can't say that I have been 100% following my own rules/reco's - but when I do I feel better and have fewer flare ups.

This is not to say I don't have any trace of my Darier's.

I ALWAYS have bumps.
I ALWAYS have redness.

It's just manageable with the above regime.

See?

Stress.
Lady Time.
Parties with all the sugary treats and alcohol.
Sweating really hard at the gym.

All that and more makes for visible/more bumps. That's just life. For me anyway.

So I'm really terribly sorry, my blog isn't doctor approved, nor is it the recipe you have been looking for to make this go away (but if you have it please share with the rest of us!)

 I'm just letting you in on my side of the fight against Darier's - and I hope you take something positive away from it. I hope you share your struggles and wins with me so we can learn from each other.

But other than that?
It just goes on. I wear a lot of scarves. I have a lot of cover ups for the beach. I try to avoid certain foods if I know I'm going to have my picture taken or whatever - and I have had a shift in career to get behind the camera rather than in front of it. It's my way of dealing. But that's just it - my way.

Please share your way of dealing and maybe it will help others too. That's all I'm doing here :)

Thanks for your emails and comments.
I hope we can help each other out.

-Adrianna

Tattoos and Dariers

I got a tattoo!

A teeny tiny tattoo...

That's me & my brother getting a tattoo!

I was worried that my skin disorder would FREAK out so I started small: it's probably about 2 cm x 1 cm in total and I used dark brown ink on my forearm. Now I got it in a place that doesn't have flare ups, but I was told that it could go either way with tattoos. 

My experiment has so far been a success! It's been 2 months since I got it and it is healing perfectly. Do I want a back tattoo over my regular flare ups? Not really. But if you were shying away from your decision to get a tattoo because of your DWD I would say to find a place away from the regular hot spots. I did what they told me: kept it clean and dry except for the recommended moisturizer and out of the sun (which is easy for a Ginger like me!)

So! No reaction out of the norm and now I am planning my next tattoo... 

Living with flare ups.

So my January and February were both nuts. Seriously. I don't think I managed any downtime until this past weekend, the last weekend of February. I had a major major audition that made me live on edge for a week and then a final term paper due the day after. It was a stressful time.

So I needed to unwind! I went to a friend's cottage and kicked back a few beers and eat vacation food (read: sugar and fats) for 48 hours. Guess what happened?

This:

Yup. Sad Panda. 

A flare up so bad that it hurt to wear clothes. The camera doesn't capture just how raw it is (because it's still flaring!) and how much it has grown. It has turned up along my neck again and all down my back. Does your DD move around your body too? Mine used to be thighs and neck. Now it's mainly neck and back? 

I am trying to eat clean: lots of veggies, oatmeal for breakfast, no processed/added sugar, a hault on all things alcohol. It feels like I'm back in detox. I haven't started the food journal but if it doesn't get better in a week's time I think I will have to start one up again - and that means really detoxing. I cycled in Vit E cream but I find it greasy and not as good as Vit A cream but I am hitting Desperate Levels at this point!

I need to remind myself that there is no overnight treatment, that it is every action I take - I need to meditate, eat clean, and drink lots of water. I need to make sure I don't skip vitamins and pine bark. This seems so simple but then a friend's birthday is here and the party is at a bar - pop and booze = ugh. You know this story. It's hard to always stay true to your DD. 

5 Things I Will Do For My Skin

1. Drink Water like I'm a camel

2. Keep up on my pill therapy: pine bark, Vit B, D, Multi, Probiotics, *Zinc and *Omegas (which I am bad at remembering)

3. Lots of clean eating, meaning easily digested and without a lot of sugar and fat (like brown rice, green leafy veggies, oatmeal)

4. Go back to taking my tea and coffee back (sad sigh)

5. Yoga and quiet times. Gotta get that stress down!

What do you do when you flare up?

Skin irritations and Darier's

We all get the little red calloused dots. We all get what looks like a rash too. But sometime ago I noted that I got a flat burn like irritation: http://fightagainstdariersdisease.blogspot.ca/2014/10/ew-flarenew-flare.html That was Oct 2014. Here it is now:

Believe it or not THAT is "better" - it's not as raised and red, but it's still there. It's just above my waist where no clothes chaff it (if it were the 80's with highrises I would be in trouble) and it doesn't hurt at all... I just find it weird. It's the only one like it and it has been there for 4 months... Do you get these? 

I think it's THIS exact inflammation that reminds me I'm not reacting to something, I'm not "doing something wrong" like forgetting my pills or eating too much sugar (which can make this disorder worse) - nope. It's just there. And that's the way it's gonna be. Which is not fun but denying it will get me no where. 

If you have any insight into these flat rather large (it's the size of a nickel) patches let me know! I have tried all the things listed in this blog and it is still there. 

First post here but not ever!

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!
 --------------------------------------------------------------------------------------

 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!
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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