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. 

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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 :( 

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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. 

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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

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

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!