calcium196

I've been working on research on the eye complications of EB. Have you had any eye problems related to abrasions or ulcers? If so, what was the experience like? Have you had any success with treatments? Any long-lasting effects?

I’m sorry to hear about that history of abrasions, and obtaining treatment, but I’m glad that you’ve found bandage lenses work for you. It’s sort of an odd area of misconception, to my knowledge they do not have any severe complications. I believe there are several studies that show benefit without increasing infection, and yet in some surveys people with EB cite fear of infection as the main reason they don’t use bandage contacts. Unfortunately the literature regarding bandage contact use is probably only well known by a small community of eye doctors who regularly take care of people with EB. Hopefully we can change some perceptions and make sure people are getting safe, proper treatments the first time!