An update: After 23 years since diagnosis
Judith – First of all thank you for all the work you have done to keep Degos information available to those of us who have had a lot of questions over time.
I gave you my history way back, probably ten years ago and can still report that I have had no problems since I was treated with Plaquenil about 20 years ago. Looking at some of the pictures that you have posted I never had as many lesions as I saw in the pictures. I would say a couple dozen, mostly on my back, chest hands and feet. My wife first noticed them around 1990. The first dermatologist diagnosed it correctly, but didn’t know what to do. I then went to the University of Texas Health Science center in Dallas where they took an interest and finally, after many biopsies and visits treated me with Plaquenil for about a year. All lesions dried up and no new ones appeared. I have been fine every since then, so apparently I had the Degos type that only affects the skin. By the way, my brother also had skin lesions about ten years ago and with the same treatment was fine within a year. he has had none since then, too. I am now 71 yrs old and my brother is 6 years younger. Hope this helps those that are really worried about the future.