LePlaneteSauvage t1_j0xdrwi wrote on December 20, 2022 at 2:56 AM

I have well medicated EBA. I haven't had any blisters for about a year now but I still have extremely fragile skin, particularly on my lower legs.

It is impossible to communicate just how painful this condition is. I would not believe it if I did not experience it myself. I have experienced a lot of pain in my life, but this is unbearable. The best analogy I can come up with is that it feels as if you are pushing a glowing ember against your skin when anything touches an open sore. This is particularly true for water which makes showering extremely difficult at times.

I just want to give this some context because "blistering skin condition" is really underselling it. I'm not a religious person, but God help anybody suffering from EB.

the_real_mvp_is_you t1_j0xfruz wrote on December 20, 2022 at 3:12 AM

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.