the_real_mvp_is_you t1_j0xpesl wrote


the_real_mvp_is_you t1_j0xfruz wrote

I have EBS localized that I inherited from my father. These study results are great news.

I've described walking on blisters like walking on coals or a bed of nails or broken glass. It's so much worse when they're in an area that cycles. I've had blisters last for three to four months in one area. I can still only imagine the pain that those with RDEB suffer from.

They call us all butterfly people, but my skin is tough as leather compared to theirs. And that's not even going into JEB.


the_real_mvp_is_you t1_j0xeprg wrote

If this was treating EBS then the published results would have said that. Having DEB was definitely a criteria when they were recruiting. I saw the recruitment go out from DEBRA.