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.
LePlaneteSauvage t1_j0xdrwi wrote
Reply to Gene therapy gel heals decades-old wounds in trial for blistering skin disease. Researchers find that a gel tested in patients with a life-threatening blistering skin disease helps wounds heal. The gel — the first topical gene therapy — awaits FDA approval. by Zee2A
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.