Nick, from London, UK
Having read so many stories, I thought I should add my own which is, to date at least, a happy one.
I was diagnosed, by the third consultant dermatologist that I saw, with Degos in 1997. They thought it was Lupus at first. I was then aged 39. I was told that it was “extremely serious, potentially fatal” by people with, let’s say, a less than perfect bedside manner.
I quickly developed hundreds of small lesions over my whole body, mainly the trunk, but not my face or neck.
I had quite a lot of treatment in a strong sun machine (being told that skin cancer was a possible side effect!) and was put on 300mg of Aspirin a day. There has been no other treatment.
10 years later, I have now had no new lesions for about 4 years and the old ones have faded a sort of pearl white and are no longer too much of an eyesore. I have been told that I may have a form of non malignant Degos. They don’t really know, and who knows if the Asprin works? occasionally I forget to take it and nothing seems to happen.
No one seems to know what causes this of course. I am told that it may be an anti immune issue, which is interesting as I also have mild Vitiligo, which I gather is also an anti immune condition.
Anyway, good luck to everyone.