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!