My hard plight - Story of a 29 year old dealing with folliculitis decalvans for more than 10 years

Hi all,

I am super happy to have found this forum, and I hope to find people who deal with the same problem as mine, and exchange a lot with them.

I have had Folliculitis decalvans for more than 10 year. Since it started it has gotten more and more severe year after year.
Today, I have almost lost all of my hair, and my scalp is just a mess of cheloid-like skin parts, and old (and new) inflammation scars.

I am really looking for support and ideas. I would LOVE to get to know people who have cases as severe as mine to know how they deal with it, the impact it had on their lives, what medication they got from doctors, what worked and did not etc, etc.

Needless to say, like most of the people I have read the testimonies of, in here, I have been going through extreme breakdowns, lack of confidence, social and professional difficulties and no love story for a few years, even if I am young and still full of life and hopes.

In a way it has helped me to be less superficial (just in a way) and maybe more down to earth and intelligent as I used to be a fervent Christian but the hardships I've gone through the last ten years while He kept silent and absent changed my vision of things big time.

In other words, I need no prayers or pity as I have already been there.
What I need is positive things, moral support and I would love to help others too!

I will post my pictures in a reply to this message. I believe I might be the most severe case of all who have posted pictures so far as I appear to be the only who really needs to wear a wig as my condition is so severe and the aspect of my scalp so disgusting.

To add a touch of hope and positivity, I also want to post pictures of me with my wig. I don't look so good in it, but not so bad either.

I hope I'll get a lot of positive answers and a real positive collaboration can start with my contribution.

Raph
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