goldenjosh

Hello!

My girlfriend just linked this post to me. I am a 28 year old male who also has Epidermolytic Hyperkeratosis; although mine looks a bit more severe. I can relate to almost everything you've said here. I've never met or talked to anyone else with this skin condition. I would be very interested in discussing this further with you! Have you ever met anyone else with this skin condition?

proof

That's awesome! I'll have to find her post. Yeah, when I was a kid I used to swim a lot, which would almost clear up the scaling for a few days (my skin would "wither" off in the pool and get kind of gross...). You appear to have more areas affected than I do; my hands and feet are the worst afflicted. My body has built up the thickness in those areas more than anywhere else. My elbows/knees are somewhat affected, but those two are the worst by far.

I don't really know what to ask, as I've thought about what it would be like to meet someone with this for a while, but never though i'd have the chance to do it. I guess i'll start with; have you found any medicines that truly affect the symptoms? I've tried 100s of things over the years and give up on most because it only treats the visual; which i can live with. I've been to top hospitals in the US (Emory in atl, Duke, etc) and i'm always the first they've ever seen (or at least I was) and the most reliable thing i've found to treat the scaling is plain old Vaseline.