Tuesday, October 5, 2010

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
-------------------------------


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
---------------------------------------------

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!

0 comments:

Post a Comment