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

Trying African Black Soap: For acne and Darier's White Disorder

Fun fact: going off pill form birth control and onto a dipped IUD has changed the way my body deals with my hormones and that means my DWD has changed over the past few years, but recently it has changed AGAIN - but it's not exactly the Darier's that's upsetting... it's ACNE?! 

I'm too old for this crap!

I asked my dermatologist what a raw, red, crusted (sounds like DWD!) but with white heads was all about and she confirmed my suspicion: that's not a break out that's acne. GREAT.

So I leaned into some postings in the Darier's White Facebook Group about African Black Soap, this is the one I found and used:

From Mama's Life Product's website:

What it does

Helps remove scars, suitable for all skin types, assists in removing makeup, delays aging of skin, and removes extra oil from skin, excellent for razor bumps and in-grown hairs. Rich in Vitamins A, E & Iron, Revered for having skin nourishing benefits due to an abundance of antioxidants.

How to use it

You can use the Black Soap for showering, bathing, washing your hands, hair and face. Take the Black Soap apart and knead it into a ball to make sure there aren’t any jagged edges, and rub between hands to work into lather.

Key Ingredients & Benefits

100% Unrefined Raw Shea Butter: Shea Butter can be used to treat all of the following skin conditions: Dry Skin, Eczema, Infant Eczema, Stretch Mark Prevention & Minimization, Psoriasis, Arthritis & Rheumatism, Wrinkle Prevention, Diaper Rash, Muscle Fatigue, Scar Minimization & Skin Discolorations, Dry Hair & Scalp and as a natural shaving agent. Shea Butter has been used for centuries for its amazing abilities to renew, repair, and protect the skin. Shea Butter helps to alleviate eczema, soothes sunburn, minimizes stretch marks, long lasting moisturizer, rich in vitamin E, A, and F.

Roasted Plantain Skin: Helps to remove foreign objects and particles from the body. Relieves sunburn, Helps to heal from insect bite, Aids in quicker healing of wounds, Lowers chance of scarring, Treats acne and Rosacea.

Cocoa Pod: Antioxidants, Helps reduce stretch marks, Hydrates skin deeply, Sensitive skin healer.

Coconut Oil: Vitamin E, Assist In Anti-Aging, Rich In Protein, Tissue Repair, Excellent Moisturize For Dry And Hard Skin, Excellent Exfoliant.

Palm Oil: Contains vitamin E, Great anti aging product, Helps skin fight free radicals that damage skin, Deep cleansing, Helps in prevention of skin inflammation.

---

Ingredient List: Roasted Plantain skin, cocoa pod, palm kernel oil, coconut oil, palm oil, Shea butter.

Scent: Unscented

I'm in! So I tried it for a week and I am HOOKED:

It definitely helped my raw irritated facial skin; it dried it out without making it sore and itchy. I found that doing it before bed with the Vitamin A cream worked best (in the morning I used my sensitive astringent and a moisturizer **it could be that it's winter here or just the fact that I'm using soap for the first time in ever on my face like this but my skin is thirsty for a good moisturizer. So far I'm making do with the leftovers from Korea but I will need a replacement soon! Something heavy but not oily or perfumed.... I also still did my used coffee grounds as a scrub 2x this week, and avoided the chin area/went over it lightly as it hurt so much.

No makeup in my pictures, and they were taken after washing my face with the soap. The lights are so bright that you don't really get to see how red and raw it was. 

I am going to keep this for a while and I think once my Aveeno sensitive skin wash runs out I may switch to this as an all around body wash too (though I will have to secure a good body lotion as it is drying) any suggestions on what you use for body lotion and facial moisturizer is welcome! Leave me a comment to tell me what works for you! 

While in Korea... Beauty and Skin Products from abroad

SO I recently went on a trip to South Korea and I experienced their OBSESSION with skin care. For those that live in Ontario you will understand when I say: take all the Starbucks and Tim Hortons and change those into makeup and beauty stores = that's Seoul, South Korea. They were EVERYWHERE. My travel partner and I pretty much went into every one of them (she was fascinated with their products and became a little obsessive herself!)

Now people around me know I have a skin disorder so she knew I wouldn't have as much fun playing potions class in every Etude House we came across. But I was willing to try things that were for sensitive skin... and a face mask or two because they just looked lovely! I tried a tea tree oil mask and I have to say it was GREAT! Take a look:

It was super hydrating and cooling and I never had a breakout or irritated skin after. I liked them so much I got a second pack of them to take home. Roberta, my travel buddy and makeup Yoda, recommends doing them every week (or every other week if that sounds too much to someone like me!)

I have also been trying their SoonJung line and so far after a week no bad reactions and no irritation.

I also picked up one of these (well not this exact one, I bought mine for about $3 in a Daiso in Seoul...) 

And it's a great way to not use pad products/something reusable and better for the environment PLUS it just uses warm water to take off your makeup. For me, less is better with my skin, so to just use water or a tiny bit of light soap like Neutrogena Naturals is great. I highly recommend adding this to your arsenal!

I will repost on more of the products I'm using from Korea, but so far I like how light and non-irritating they are. The makeup all include SPF too which is a necessity with me being a ginger (and the DWD). The ones I am looking forward to are: Baking Powder cleanser, more sheet masks, and this Face Blur.

Having DWD means I deal with a lot more redness and spot treatment than most, and sometimes all the products can be overwhelming so I often just... don't do anything. But it's fun to play with makeup again and build confidence around looking "pretty". It's not an everyday thing for me but having healthy skin should be - I am looking forward to learning how to clean and hydrate my skin in a helpful way as I age with DWD.

UPDATE JAN 23 2020 - I have been back for almost two weeks and I LOVE that face pad, it has become a daily ritual and so great. The SoonJung line has been nice but not exactly an improvement, but still nicely hydrating and not irritating me. The Baking Powder foam cleanser stung the first time I tried it so I steered clear of it since. The sheet masks are still my #1 favourite from this trip!

Winter Flare Ups: Living with Darier's White Disorder in all seasons

Each winter I am reminded why I hate the cold weather: it's dry here in Ontario and I run my humidifier constantly, but it is never enough. My scalp gets flaky and my skin gets flares easier. But this year a NEW thing has happened :( my face is getting dry red patches that itch and have a mix of acne and flare up bumps = NOT FUN.

dry patches are new and I hate them

I am trying to treat it with a mixture of things as I am finding one cream is either too heavy (Vitamin E cream and a new one I tried from LUSH called Celestial) and takes away the redness/dry spot but leaves pimples, or it dries out the pimples and soothes the dry skin but leaves flaky dry skin (Vitamin A cream, Polysporin, and the Germolene).

UPDATE: Celestial didn't work out, it was too heavy and left me breaking out** I ended up using it as a hand cream.

I hate winter.
(And yet I prefer it to summer? Ugh, scratch that, I just hate my stupid skin.)

Granted I'm also highly stressed lately and have been consuming more sugar than normal... I need to focus on getting back into a routine of meditation and low/no sugar intake as my back has sprouted red "wings" and the front of my torso is sporting red blotches here and there. I am feeling very defeated.

I have been going to the gym somewhat regularly so sweating and friction of the workout clothes might also be contributing, and they have a hot tub there which is chlorinated so that could be helping or hindering me as well; I have heard that chlorine helps some of us with DWD and people go swimming in pools to help keep flares down.

I am going to go back to 2x 100 mg magnesium a day - one in the morning and one before bed to see if that helps, on top of my regular Vitamin B + Pine Bark Extract mix in the morning. It could be time to mix in Vitamin D (cloudy winters are not making this fun either).

So just a reminder that it's not always the same thing day in and out that works - sometimes you have to bang your head against the metaphoric wall and try to tap into what's making the flare and fix it on the fly.

Happy winter everyone :/

This is the worst.

Seriously. This is the worst my Darier's has been since back in my 20s when I didn't know what it was. It is sore, weepy, itchy, and this is better than last week - granted I needed to let my skin calm down after me trying to put everything on it (TL;DR Bio Oil will mess you UP!)

The pictures can't really capture how red/scaly/irritated/ it is (thanks iphone camera and my lame photography skills) and it's spreading past my usual areas to upper neck and my back... I haven't been this concerned in a while. Yes, I know it's only been 2 months since I went on the IUD and I hear that changing your hormones can affect your Darier's and I have always believed that - I mean, come once a month my "lady time" makes my skin flare up to the point of tears. Now it's at that as base level and it's driving me crazy....

So I'm doubling up on Vitamin A topically and orally in pill form. I'm even splitting the gel cap of the 10000 IU and putting it on the saddest part on my right shoulder/neck. Not applying cover up and letting it breath, lots of scarves and turtlenecks... I am going to talk to my doctor about hormone therapy to see if I can settle this down with more estrogen or progestin, as the low dose from switching t an IUD is the ONLY thing that has changed - I still eat the same, drink the same, and my supplements haven't changed. So that's gotta be it. 

I don't know if I can ride out my natural body chemistry - my friend said it took her body about 6 months to adjust to the IUD after doing pills for most of her life and that's the same boat as me. But, she didn't have her skin reflect her inner chemical circus! 

Gah. This is the worst. 

Trying something new: Saje Restoral Ointment

I'm a bit hooked on Saje what with their amazing smelly stuff - but being so prone to flare ups and finding the more natural I go the more my skin seems to be happy with me... I started trying things other than their lavender pillow mist (which I HIGHLY recommend...) but their skin stuff.

Restoral Healing Skin Ointment's first ingredient is PINE TAR! See a theme here? My Pine Bark Extract pills are something I can't live without - and here I find this pine tar ointment?! I have to try it.

It is like a potted lip balm in texture, it's brown and it leaves a bit of an orangey brown colour on my skin when applied. BUT it is soothing and it doesn't make my DWD itch or flare. I have been using it for about a week now and my neck bumps (for lack of technical term for the bumps that are ALWAYS around) are not chapped or red, they are pink and soft. This bodes well...

I will keep trying it out and add it to the routine - though I am still applying Vit A cream at night this is something I have started to put on when I get home from work or in the morning under my make up. (Yes I sometimes use Cover FX on my neck to cover up the redness...)

I will report back after some time but I do think it might be worth a try for those who want an alternative to anti-itch creams and ointments. I used this on mosquito bites too and it helped as well!

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. 

Protopic: Tacrolimus - I asked my Dermo

SO! A comment came through that said "New medication from my dermatologist is tacrolimus ointment. Calms everything down and doesn't have any side effects. A lot of the drugs and creams actually make you itch worse." Thanks for sharing Charlene!

I asked my dermo about it and she said the (paraphrasing) following:

It's "street name" is Protopic, and it's a non-steroid cream so unlike Accutane dermatologists can offer it to people like us with little worry because the extended use of creams for us (as we are lifers with DWD) is okay without the nasty side effects of steroids (hair loss, weight gain/loss...)

I didn't pick any up because it's new and exciting which means = $ expensive $

And you need a prescription for it (why if it has little to no side effects and doesn't have steroids?!) 

It sounds like something I might be interested in a few years when the hype dies down and I hit my 40s. 

Here's what the internet says: 

This form of tacrolimus is used on the skin to treat a skin condition called eczema(atopic dermatitis) in patients who have not responded well to (or should not use) other eczema medications. Tacrolimus belongs to a class of drugs known as topical calcineurin inhibitors (TCIs).

And another write up from Rexall:

Tacrolimus belongs to the class of medications called immunosuppressants. This medication is used on a short-term or intermittent basis to treat atopic dermatitis (eczema). It is also used to prevent eczema flare-ups.This medication works on certain areas of the immune system that may be involved in developing this skin condition. It is used when standard treatments have not worked or if there is a reason they cannot be used.

SO! Charlene and anyone else willing to tell us about how their use of Protopic/Tacrolimus is going? Any reviews?

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. 

Thank you for all your letters!

I just wanted to say thanks: thank you for visiting this site and thanks for sending me your notes, comments and emails about your insights/triumphs/questions/answers/journeys. Thank you for telling your story.

I have a separate blog at my mental health website and I invite guest bloggers there to share their stories - I want to encourage community. And I think I want that here too. So many times I hear such great feedback or even a personal story of how you are dealing with Darier's that I automatically want to ask if I can report it as a blog here. Well, why not?!

If you are willing to share your journey please let me know and I will happily post it here to share to others. 

I have readers from around the world and it would be great to hear how others are doing. 

I would love to know if you are using Pine Bark or if you have found something else that is working for you. If you have had great vs. poor results when following any kind of diet or prescription.

Not many are talking about Darier's White Disorder so we might as well start up our own discussion and fight this together.

Thanks again and I hope to hear from you,

Adrianna

Having to change (creams) is hard

Recently I had to stop using the great A Cream that Shoppers Drugmart Life Brand makes because they discontinued it. Major fail. So I switched to something in the same price bracket but at a health food store:

My face has been okay with it, but the rest of me is not sold on it. First: it smells like...roses? I think it wants to be roses. And that means there's more than Vitamin A in there :(

It's been a few weeks, and a hot summer. I spent all last week in the sun on vacation, mind you I was never in a bathing suit I was mostly covered up and always wearing SPF 60. This summer has given me a lot of freckles - so is this flare-up (see picture below) from the sun, from the new moisturizer, or…

I haven't had flat flare ups in a really long time. They have mostly been the little red dots but  I'm used to them. I'm starting to think I might have to take more than just Pinebark Vitamin B and D to deal with this again, like when I started.

I hope it's just the increase of sunshine/acting stupid on vacations and that I should probably be more careful about how much sun/sugar I'm consuming. But it could just be what it is - with age it does get worse. Here's hoping it's a blip on the radar and not a full "storm" coming on.

Info from a reader

Recently I received an email from a reader of this blog who wanted to share her insights about DD and specifically gluten diets. Her email about what a Doctor passed on to her about his observations:

Just about anything that is chronic. I have successfully used gluten-free diets for disorders such as ADHD, fibromyalgia, lupus, migraines, multiple sclerosis, rheumatoid arthritis, ulcerative colitis, microscopic colitis, psoriasis and even type 1 diabetes. The list goes on and on. I have even used it successfully for weight loss when everything else failed. If you have an illness that is not responding to medical intervention you have absolutely nothing to lose. Wheat, rye and barley may be the culprits. And, you can get far better sources of nutrients from other sources. There is absolutely no harm in giving a gluten-free diet a try—even with a child. I have a dramatic case of Darier’s disease that completely cleared with a gluten-free diet. I didn’t even know what this disease was. I called one of my physician colleagues and I researched it. You are basically born with this disorder and it usually manifests by the time you are a teenager. Imagine the worst case of psoriasis from head to toe. This man never wore shorts, tee shirts or a bathing suit until he went gluten free. This is an autoimmune genetic disorder that completely cleared on the diet. He stayed on the diet for the rest of his life and his skin remained clear. None of the medical treatments (some quite toxic) he received had worked.

What are your thoughts? Any insights into what is working for you?  In her email she also mentions that her photodynamic treatments have cleared most of her skin of the DD. My father has very bad Psoriasis and swears by going in the sun or a to a tanning salon to wipe out break outs on his body. No need for lengthy treatments (I mean we are celtic decent and aren't made to tan!) so he started at 15 seconds and worked himself up to 5 mins and he says that does him just fine!

I have remarked in the past that diet is a huge step in understanding why your skin is acting the way it is. So take care and nourish yourself, don't just feed your hunger.

Talking to Zoi

I like community, it helps us understand that we are not alone. I had someone email recently about their Darier's story - I like sharing emails here because not only is it strengthening community - it also is more question and answers we can share with others who have DD. 

Please meet Z: 

hi adrianna,  my name is Z and i too suffer from DD.  right now i am so upset and depressed because i have such a yucky outbreak that i just don't really want to do anything and i'm tired of hearing myself complain.  i have two awesome little boys and lately instead of being able to let go and have fun, i find myself thinking about my DD all the time.  

after the holidays, i am going to find a nutritionist or homeopath like you recommended.  is one better than the other?  i really need to figure out what is adding to my flareups in my diet.  i'm pretty sure dairy is lately.  now i wonder if wheat is.  i don't know where to start because i am overwhelmed with how to do it like you said.

i guess i wanted to ask you what you think i should eliminate first in my diet until i see a specialist.  

any type of retina just makes it worse and itchier.  i get so inflamed that i can't stop itching.

i am also going to try the maritime bark until i see a doctor.  of all the vitamins and supplements, and i see there are a lot of supplements, which ones do you recomment i on my own until i see a specialist.  

i look forward to hearing from you.  thank you.

Hello there,

Sorry for the delayed response - my personal life is in chaos (brother died and boyfriend left) and I don't know what to write to you other than keep trying different things. Read my blog as it has a lot of advice on these topics. I would see a Naturalpath and not a dietitian but that's me - they might work better for you! Dairy is a huge trigger for me as is sugar. The sugary foods dehydrate our already sensitive skin so be careful, the same can be said for alcohol. Talking to a professional will help.

As for the itch take warm (not hot) baths with a cup or two of oatmeal that you have grounded in a coffee grinder or something of the like - there's no need to buy special oatmeal bath pouches from the store - its just ground up oatmeal. It is really good for your skin and takes down inflammation. I like everything Aveeno - their anti itch is good - not great, because its all natural - so its nice but it doesn't numb your skin. 

Hi. Thanks for responding to my email. Sorry to hear about your recent loss. I just lost my grandmother a bit over 2 weeks ago. It was hard. I hope you are doing okay.
I have read your blogs and decided to start my own regiment of vitamins and I think it may be working. I haven't had an outbreak like this since I was diagnosed at 20 and I had to go on accutane. Did wonders but it was extremely drying. With this last outbreak, I was considering it because my entire chest and neck broke out and was itchy and inflamed beyond belief. Since I couldn't see my dermatologist for over 2 weeks, and still haven't, I researched your blogs more in depth along with others and have been doing it for a bit over a week. I think it is working. Although retinA is harsh on my skin and I'm forcing it to tolerate it, I am using it but not everyday. I do plan on seeing a natualpath to help me with dosages b/c I did it on my own. I just want to say THANK YOU for your blogs and the hope you have given me. On a good day, I take a step back and am thankful it's not life threatening, but when I am depressed, u can't help but feel pissed and sorry for yourself.
I was just wondering, how long have u been taking the vitamins and other supplements? Have u ever had a big breakout after being on the vitamins or do they suppress it pretty well. Just wondering and hoping.

I hear that! It's ok to feel frustrated and "pissed" - but not to let the negativity win out because that will lead to more breakouts :P Stress is a huge factor in this disorder I have found. I just posted about how you can make your own calming bath with oatmeal to help with break outs and flare ups. I'm just getting over one - so there is another answer: I do have break outs even though I am taking my supplements and vitamins. Stress can cancel all that out. I take an extra Pine Bark pill on those days and really look at my food intake as sugars and my other triggers will really hurt me on those days when my immunity is low or my body is stressed.

With yoga (stress relief: whatever you can do that makes you happy DO IT! movies, games, a walk, a swim...) and clean food, hydrating lotion, and vitamins I can get it under control in a matter of hours or days depends on how bad the flare up was. I am a woman so I also tend to get mini flare ups on my thighs, neck and sometimes face (where the initial break outs happened) during my "time of the month" as my body is stressed and hormones are everywhere.

Keep a journal. Notice when you have more flare ups - do they happen in a cycle? Is it a time of year (winter time for me = harsh dry season = more break outs!) After a certain food? After visiting a friend with a dog/cat/allergic pet?

I don't have the cure all. I wish I did - I could use the money for the distribution! haha - but with time and patience this can be lessened to a point that it is livable and most people just don't notice mine now.

Best wishes to all - and keep the emails coming!

DD Community part 2

More emails from great people from around the world who also have DD - our thoughts over email shared for your interest:


Hi Adrianna!My name is Tsvetelina, Eastern Europe.I was diagnosed with Darier's disease 10 years ago,now I'm 29.When I was searching on the web for new information and treatment of DD, I  found the site www.skinpatientsalliance.ca and your postings.As I also have the disease, I think and hope that we can exchange information about therapies and treatment of DD and help each other.
Like you, I've seen a lot of dermatologists,most didn't know about DD or know a few.After being diagnosed with DD, I hardly wanted that biopsy was wrong.I even took second biopsy,still the same - Darier's disease.So I had to admit I should live with it and find a treatment wich will work for me.That isn't easy,as you know that for now,there's no total cure of DD, only supporting treatment unfortunately.
With the years I have outbreaks more often,especially when I have my period.I've been taking oral retinoids - Neotigason,but only for 2-3 months because it caused me hard loss of hair.I also used topical retinoids -Retin A,Adapalene also known as Differin ( I still use it,it gives me good results) and others.I also use corticosteroids as cream - Fucicort ,wich also contains antibiotics,and I also have been on injections with corticosteroids,didn't help a lot.I have had procedures of chemical peeling,that also didn't help me a lot.As I didn't find the "right therapy",  I keep searching .And I try to stay positive and believe that somehow things will be better.
I also take vitamins and supplements but not regularly.From 2 weeks I'm taking 4 Life Transfer Factor Plus( www.4life.com) and I expect a good result.As I learn in your blog about your Hypoallergic diet ,I'm interested in what exactly it consist(I never made a diet for DD).Also about the vitamins and supplements you're taking,in what doses,and for what periods of time?Now I'm also thinking on the possibility for a surgery with Yag Laser,I read articles that it works on DD and even a complete remission can be achieved.
Hope you'll write me back and we can give a hand on our common problem - Darier's disease.
Best regards,
Tsvetelina
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Hello!

Good to meet you - and I'm sorry that you too have DD. I have posted my dosages on the website but tend to stay away from much detail because I am not a doctor nor a health practitioner - take the vitamins and suupliments to your natural path or health practitioner to get the dosage that is right for your body. Right now I take Vit B1,6,12 complex, Zinc/copper, Vitamin D, A, sometimes C, omegas on occasion when I haven't had fish in that day, probiotics, maritime PINE BARK! is my saviour. It is my miracle pill.  Look into it - I couldn't live without it!

I'm having troubles seeing all my posts on skinpatientalliace and have called them recently to figure it out - I'm thinking most of my dosage entries are there.  I hope they will figure it out with me soon!

I haven't tried most of the medication you have listed - the side effects scared me off too quickly and so did the prices! The hypoallergenic diet was to find my triggers and you can find the general outline of how to do one over the internet but I strongly suggest seeing someone to support you through it like a homeopath or nutritionist just to make sure you don't get sick eliminating things from your diet. I feel more in control of my body since the detox/diet since now I know how my body reacts to certain foods and can understand a flare up or stomach ache - its really empowering!

I haven't heard about yag laser - please tell me more!  It sounds expensive but complete remission would be amazing.

I'm sorry I can't be more helpful but hopefully having a dialogue will help us both!  Thank you for the email,

Adrianna
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Hi Adrianna!Thank you for your e-mail!

About the Yag laser I'll send you some links to websites,where you can find detailled information:

http://www.asclepion.com/root_corporate/pdf/studies/MCL%20Efficacy%20of%20erbium%20laser%20ablation%20in%20darier%20disease%20and%20hailey-hailey%20disease.pdf

http://webcache.googleusercontent.com/search?q=cache:6eA19evcLAkJ:www.ehow.com/way_5670338_laser-therapy-darier_s-disease.html+laser+therapy+for+darier's+disease&cd=2&hl=bg&ct=clnk&gl=bg

I didn't recently speak to a dermatologist about this procedure and don't know the prices, but I think it will be expensive too.The procedure must be done during autumn or winter,here the dermatologists don't have any experience regarding the use of Yag laser for DD,that's also why I hesitate.

I found here Maritime Pine Bark and will try it.Also I start again taking Vit A+E, Fish oil and will include Vit B complex.I continue with 4 Life Transfer Factor,you can check on it,it's not a medication but a supplement, very good for the immune system and recommended for autoimune diseases, what is DD.

I'll see what I can do about the diet,I never have been allergic to food,but regardind DD,I noticed that it gets worse after drinking alcool or eating chocolate,desserts.

About the medications, after using Neotigason,I don't want to  hear about any oral retinoids,it was really awful.I can recommend you to use topical creams with antibiotics and corticosteroids ,just in case of inflammation and infection.

Thanks again for the information,hope we'll keep in touch!