I Wish I Didn'T Have It

I've had Darier's for 58 years. I've been on every medication, every treatment from Mutton Tallow to Accutane to Tegison which was illegal to prescribe in the U.S. at the time(had a friend at Hoffman-La Roche in Germany who sent it to me). Every course of therapy just short of VooDoo. Antibiotics work about the best and good old Noxzema keeps my skin from being too dry and I don't break out in tiny cysts from it as I do with the really greasy creams. Bathing in a tub of hot water with one cup of Clorox keeps the infections down(smells like I've been swimming in a pool for months, though).
Diet didn't help-gluten free, carb free, just oatmeal three times a day for a month didn't work. A near starvation one didn't either-I was just grouchy. No caffeine of any kind, water that wasn't full of fluoride(off the mountain straight into the tap in Scotland.)

I've had my face lasered 5 times. The lesions stayed away just long enough to heal from stripping off the first two layers of skin about 3 weeks. Not worth the pain and expense(not covered by insurance-it's considered cosmetic, no matter if you're doing it for a disease.

Wore only cotton, washed the clothes in just hot water, no soap, one dermatologist gave me a medication for leprosy and another for infertility-to see if hormones might help or lack of them might help. Didn't work.

The Dead Sea didn't do it either, was itchy for weeks after that treatment. What works on some people doesn't work on others. I have a great dermatologist who lets me write my own prescriptions and if I find something that even kinda works she helps me with it.

Good luck to anyone who has this stupid disease and maybe one day genetic engineering will get rid of it, so no one has to suffer.

Trollie Trollie
61-65, F
1 Response Mar 30, 2013

i totally agree with you. I have tried all of those diets, pills, you name it I've done it. Accutane helps tremendously but having to take breaks from it is the absolute worse. I'm studying to be a nurse so maybe I can try and find a cure with a genetic doctor.