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a comment and some questions

jenny09 Message
17 Feb 2009, 09:50 PM

I've found that A&E ointment and neosporin help keep the inflamation at bay but does not totally clear the skin. Neosporin with pain relief helps the itch/sting a bit as well. I've had Darier's for about 11 years, but was only diagnosed by biopsy less then a year ago. The areas that are affected are, the right side of my neck and a small area on my forehead by the hairline. This last year after I turned 27 is when it began to get worse. My Dermatologist wants to try v-beam laser treatment, but I'm a little afraid to try that - also, the only laser treatment that I read about, that worked, was YAG laser. Does anyone have any experience with either of these treatments? Also, does anyone have children that have inherited this disease from them? And, what are the recomended vitamin supliments? Thanks!
jenny09 Message
20 Feb 2009, 07:24 PM

Thank you for time and thoughtful response Melissa. -Jenny
ConcernedMom Message
20 Feb 2009, 07:50 PM

Jenny, My 21 year old has had good luck with Gold Bond Medicated powder of an evening to keep the area dry. Another thing that has worked well so far is Tea Tree Oil to dry up the lesions on her neck and hair line (her areas of break out are VERY similar to yours). It smells strong but does dry things up well. I think she has had to shift around somewhat. Melissa has some great ideas on the supplements. My daughter takes Olive Leaf Extract in pill form which is a great anti fungal and a multi vitamin as well as Vit. C, etc. Darier's is so strange. Everyone is different but I do think eating habits play a huge role in it. My daughter notices a difference when she eats well and excersises. Are you having any immune issues?? My daughter's immune system is so depleted. Good luck to you. Concerned Mom
jenny09 Message
23 Feb 2009, 07:12 PM

Hi Concerned Mom, Thank you for your supportive words. Excersise does seem to make a difference for me as well, mostly becasue I think it helps me manage stress, which is a sure trigger for my Darier's. In regards to immune issues; Yes, I have always been susceptible to random illnesses. A few years ago I had a rash that my Derm. diagnosed as Pityriasis Rosea wich is viral. Normally once you've had it, it shouldn't reoccur, but i've had it 5 times now and it can make you feel quite tired, not to mention it looks pretty bad. There are different things here and there, that it seems like someone with a stronger immune system wouldn't catch. I just try to get lots of rest and drink LOTS of water. I used to get pretty bummed out about my Darier's and the complications that come with it, but I just try to remember that it could always be worse. Best of luck to your daughter in finding a treatment that works for her. I'm on a personal mission to improve my quality of life, so I will be sure to post anything new that I find that helps. Thanks again, Jenny
BrendaANS Message
10 Apr 2009, 05:37 AM

I'm new to this forum. My adopted daughter has Darier's disease. I've read all of your entries about vitamins, especially vitamin C. We have found that certain foods make the Darier's worse. She cannot eat citric or tomatoes. These really set her off. She has gone to at least 1 dermatologists with no good results. For a good while we watched her food and doctored her like one would treat acne. This worked for a while until she started itching last year. Her primary care doctor tried Doxepin. It worked well stopping her itching but caused her to gain weight and made her drowsy. Another doctor she has said that it may cause depression if she takes too much of it. Her doctor also had Doxepin compounded with a cream. It worked pretty well also in relation with the oral medication. Her doctor has started her on something else right now though to see if it would be safer. I will tell my doctor some of the things you recommended.
mario111111 Message
10 Dec 2011, 04:34 PM

Hello Everyone, Can you please join the Facebook page for Darier Disease.. The page is called : Darier's disease, let's know each other!!! and please Souleiman can you share your experience on facebook... Thanks a lot!!!