2026 Update: The one I have been dreading

 2026 Update: The moment I have been dreading... Buckle up. It's a long one. 

*meds and action plan at the bottom for those who want to skip the storytime

This update is for my DWD girlies, because our hormonal changes make for constant navigation of flares that I have found only birth control, mindfulness, and skin elasticity focused supplements can help with.

That all got thrown out the window after nearly 20 years managing my DWD with all the above.

I hit perimenopause in June 2026. I had two irregular periods and went from this:

To this

I haven't had a flare like this in 20 years, back when I was first going through diagnosis in my 20's. I was beyond horrified, Germolene and Pine Bark and all the mindfulness wasn't doing anything to stop it. 

I went to see my family doctor who listened to me and heard I suspected my irregular periods were to blame - I was told in my 20's by that random angel of a nurse that when I hit my 40's my skin would change, what she didn't mentioned is that perimenopause would say "hold my beer" and double down on how awful it was to be. 

My doctor listened and asked if I wanted to see a menopause specialist - yes! Definitely! Ok see her in two weeks. And then she heard that I wanted more meds to control the pain and spread - so I needed to see a dermatologist, so she sent me to one that did clinical trials and more cutting edge stuff. I was relieved to have an action plan. Until then I was covering up with scarves IN THE SUMMER but I made it fashion: 

Bathing suit with scarf = vampire anime style?!?!

The DWD got worse, it was weeping, breaking, bleeding, and the day I saw the dermatologist I was migraining (likely from all the stress of this) and super depressed. I was hoping to discuss photodynamic therapy but quickly found I was not in a safe environment to discuss my DWD...

I was sent to clinical dermatologist Dr. Geeta Yadav, MD who was absolutely horrible.  Not only did she ignore my migraine (I told her I was migraining but she insisted on shouting at me and keeping the lights on full while we talked) but she also wouldn't listen to my hormones theory citing "I only treat the skin"

Baby. The skin is our largest organ and it literally holds us together - of course it's connected and influenced by a number of things. 

She gave me topical retinoids Arazlo: Tazarotene lotion 0.045% to put on the affected area, also saying I was "lucky" because women "my age" are begging for this to help with their wrinkles. 

Yes. That's why I'm here, I'm SO LUCKY to have a rare genetic skin disorder that my skin just cracks, bleeds, makes plaques, and feels/looks like a sun burn with itchy poison ivy on it... I'm clearly here for my crows feet 🙄 Then she said SEE YOU IN 4 MONTHS. Lady. I am actively bleeding and you don't want to see me for a SEASON?! 

I hated this whole experience. I cried in the car. I cried on the way home. I cried myself to sleep. 

But I did learn something from her - she mentioned a Scott Walsh at Sunnybrook Hospital that was a kind of specialist (unofficial) on Darier's!!! So I asked my doctor to set me up with him and thankfully it was only a month long wait. During that time I was using the topical retinoids which burned and peeled my skin, making it worse and it spread all along my chest, and some on my right torso...

I cried a lot. 

I saw the menopause specialist (unofficial just really knowledgable) and she said that it could be that the IUD's progesterone has helped regulate my hormones, and that yes this could be two irregular periods but we can't know for sure with the IUD in. We talked about hormone replacement should I opt to take out the IUD to understand my perimenopause and that might in turn help my DWD... But that means lots of changes like taking out the IUD. 

SO MANY DECISIONS. Not enough solid answers.

My birthday gifts were scarves, and I started to normalize my covering up with an OOTD type post hyping my "scarf game" and one of my posts inspired an artist friend of mine to draw me and I cried to see such a bold and confident cartoon of me - because I felt the exact opposite. Constant pain. Constant management. I was drained and it had only been two months. 

August 18th and I finally saw the specialist at the hospital, but not Scott Walsh, his assistant resident Dr Bridgman, who was exactly whom I have been waiting for these past 20 years!

She listened.

She validated.

She was warmly curious and empathetic. 

She made an action plan for me that made me - yes - cry - but this time out of relief. 

The action plan

She agreed that Darier's is VERY influenced by hormones. So ladies, look to your cycle management; I was on birth control pills until I was 35 and then moved to Mirena (the dip IUD) which has greatly helped keep my DWD in check for the past two decades. But with me coming to the end of the 5 year efficacy for the IUD no wonder I had breakthrough bleeding/irregular period. Dr Bridgman asked if I wanted to go back on birth control or start a new IUD cycle if that's what's working.

Dr Bridgman wanted to get my pain under control so she prescribed a steroid cream Taro-Mometasone Cream (Mometasone Furoate USP 0.1% w/w) and to stop immediately the topical retinoid. She guaranteed I would feel less pain and have less irritation in 48 hours. I wept. For real. 
"Wow, the bar is really low with you huh?"

"You have no idea the 20+ years of no one having answer, no one caring to listen..."

Since topical retinoid is really harsh and acts an an irritant ("Why did she give you this?!" Dr Bridgman asked me) she prescribed oral retinoids, low dose to start, epuris isotretinoin capsules 10 mg

And then she recommended I carry a hypochlorous acid spray for when my skin bothered me and I wasn't home, and it would be too much to break out Germolene or to not rub something in to irritate it further - this spray is supposed to help with irritated skin, and for me she suggested a locally made one from E11ement which says 

• Gentle on Skin: Safe for all skin types, including sensitive and acne-prone skin.
• Natural and Effective: A powerful yet natural disinfectant that helps maintain skin health.
• Multi-Purpose: Use it to cleanse, hydrate, and protect your skin.

I tried it and smells like chlorine from a pool... It didn't burn? It didn't relieve like Germolene but it did feel good? I'll keep a small bottle on me and report back after a few uses but the idea sounds great. 

Now it's been 2 days and I have done the cream twice a day, and the pill once already - the cream is a DREAM I went down in redness and pain point IMMEDIATELY. Itchiness went down too. The pill is really low dose but it is supposed to cause dryness, like so much dryness that my lips and eyes could dry out too. Lots of moisturizer is needed. 

Before Taro-Mometasone Cream (Mometasone Furoate USP 0.1% w/w)

After. Noticeably less red irritation after ONE application!!! 
(white shirt was day time clothing, black shirt was my PJs haha)

In fact I started making my own beeswax balm by adding beeswax, olive oil infused with calendula and coconut oil infused with plantain (not the banana!) and yarrow. This is really hydrating for me and doesn't burn, and doesn't dry out like most moisturizers. I'm experimenting with what hydrates the most and is also calming. 

Next steps:

-I'm going to stick with this regime for 5 weeks until I see Dr Bridgman again in September.

-I'm going to relay this to the menopause specialist and see what my migraines will allow for (birth control and hormone treatments are hard to navigate with migraine history...) and likely take out my IUD to see what happens (is this a dumb idea I don't know! But then I can either get a new more potent IUD or go back on oral contraceptions.)

-I'm doubling down on my sun protection as the oral retinoids mean I'm all more sensitive to the sun not just my neck area (nothing new I have hats and scarves and SPF 60)

-And I will keep up with skin support like Pine Bark, Zinc (Dr Bridgman loved to hear I was taking Zinc so I want to make more of that as a habit), magnesium L-Threonate a+ BisGlysinate, CoQ Enzymes, Vit D + B, Omega/Fish Oil. 

Wish me goodluck. 

 Resource share: Google Scholar search engine

Did you know that you can search peer reviewed and scholarly articles about Darier's White Disorder?


Go to Google Scholar and type in any names associated with Darier's White Disorder/keratosis follicularis/Darier's disease) and read up on what studies have been finding as they are being published!
Like I did for the image above: https://scholar.google.com/scholar?hl=en&as_sdt=0,5&q=darier%27s+white+disorder

This could open conversations with your dermatologist or your naturopathic practitioner.


Best wishes,
Adrianna

2024 Update: diet and oils

 I have been experimenting a lot…

Not only do I center DWD (Dariers White Disorder) in my diet and lifestyle, I also try to make room for alleviating migraines and my allergies.

This has led to new experiments in my diet as I am now 41.

I am taking 200 mg CoQ10 daily, plus 5g of powdered collagen in my mourning tea with oat milk. This is to help the elasticity of my skin and the strength of my nails. Some with DWD experience horribly brittle nails and I have found with proper diet I have avoided this. But things start to decline for skin repair and need a bump once we start aging into our 40’s.

I’m also starting to take Chaga mushroom powder in my drinks or sprinkled on my peanut butter and toast. The less stress my body experiences either through dehydration, improper food nourishment or mental health the better - it all causes flares, migraines, and anxiety for me.

And last but not least I have started using castor oil for deep moisturizing: it’s very thick so I find spot treatment is best like on my neck and face when I’m flaring. But spreading it on body flares on my back or torso is… unpleasant. But it’s hydrating, odourless, and doesn’t sting. What does irritate my flare is the thickness and me spreading it and pushing it into my skin. So I just use it as a dab here and there and it’s great! Love it as an evening hydration. (Any castor oil will do as long as it’s became free and in a uv protected glass bottle and organic).

Good luck out there! 

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?

Ending Antihistamine Diet

 Day 28: ending two weeks of the antihistamine diet

It's been about two weeks since I started the anti histamine diet and I am so ready to come off of it. As I predicted, it didn't make much of an impact because I was ALREADY eating really low in triggers. I knew going into this that alcohol and sugar are the WORST for my skin. Stress and dry air (winter in particular) also don't help. Here is my skin at the two week mark: this is my usual "resting" state. 

I remained at 142 pounds, and I felt more bloated overall thanks to the evening primrose/OMEGA pills I had to start taking. I played with when I took them and I think they are best taken with dinner, as taken with lunch I rarely felt hungry for dinner 4-5 hours later. 

Cutting out gluten was the WORST. I have a few friends that are gluten free and I have to say I'm so sorry, the impact gluten has on my routine for quick satisfying foods is really incompatible. Granted, a lot of people pity me my lack of dairy but that I never seem to miss. 

I think I will carry forward less soy milk products; not a huge difference in my blemishes and redness, but enough to continue to minimize it and not drink it in my coffee/tea/cereal/as a milk substitute. I like having both almond and oatmilk options in my fridge as it depends on what I want to do with it IE cook with oatmilk, drink almond milk.

I did have a two drink night with dinner after a stressful day of finding out my grandparents are not doing well and I have to make an emergency trip out east - and that night I had a hard time staying asleep with a 4 am panic attack. For me it seems one drink is fine, as long as it's not red wine. But if I have red wine or more than one = 4 AM wide awake sore stomach and panic. *sigh the joys of sipping red wine with my fiancé are pretty much gone :(

And on that note - I am flying off to the Maritimes to be with my Grandparents for a time and I won't be able to keep this up so the ending will be abrupt and I'm sure to get a scolding from the doctors when I return for my visit in two weeks time. Oh well. Life, rather, death, happens. 

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!

Day 14: Check in and starting new antihistamine diet

 

Day 14: The Check Up

After logging my diet for two weeks and being mindful of the way I eat, now I get to do the antihistamine diet. It looks a lot like the elimination diet I did 13 years ago...

Here is my list for the next two weeks. I'm avoiding high histamine foods such as:

And I have these as "prescriptions"

Supplement prescription #1

Used for: Supporting skin health

Name: High EPA Omega-3

Brand: Aqua Omega

Dose: 2 capsules

Route: Orally

Frequency: Twice daily

Additional Instructions: Start by taking 2 capsules once per day with your meals. After 3 days, if well-tolerated, increase to 2 capsules twice per day. Take for minimum of 3 months. Discontinue prior to any surgery as omega-3 increase blood thinning. Discontinue if you experience any adverse effects.

Available here: https://well.ca/products/aquaomega-high-epa-omega-3-fish-oil_153476.html

Supplement Prescription #2

Used for: Essential fatty acid that supports skin health

Name: EPO SAP

Brand: NFH

Dose: 1 capsule

Route: by mouth

Frequency: once daily

Additional Instructions: Can be found at healthy planet. Some side effects include upset stomach, stomach pain, headaches, & soft stools.

Body wash:

Used for: Supporting healthy skin & restoring skin barrier

Name: SA Body Wash for Rough & Bumpy Skin

Brand:CeraVe

Dose: 1-2 drops

Route: Topically

Frequency: when needed (during baths or showers)

Additional Instructions: Massage body wash into skin during showers/baths & rinse. Can be found at shoppers drug mart or on amazon: https://www.amazon.ca/CeraVe-Salicylic-Cleanse-Exfoliate-Rough/dp/B077TWXCQV/ref=asc_df_B077TWXCQV/?tag=googleshopc0c-20&linkCode=df0&hvadid=336235023036&hvpos=&hvnetw=g&hvrand=10326168048758910330&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9000908&hvtargid=pla-527480207483&psc=1

Check in:

weight: 142

skin is... pretty clear actually! I went back on CBD 15mg a day as the existential dread won out. And it isn't making my skin crazy but it sure does make my eyes itchy and nose full. So very allergic, but hey, I'd rather itchy eyes than all the fallout of the side effects of an anti-anxiety pill. 

This is as good as my skin usually gets, I just woke up too so after a full night's sleep (thank you valerian in my tea) my skin is as rested as me:

thighs are very clear from 2 weeks ago

left shoulder

right shoulder