People with recessive dystrophic epidermolysis bullosa (RDEB) have two different kinds of wounds — chronic open wounds that are larger, more painful, and slow to heal, and recurrent wounds that repeatedly close and reopen, but almost always heal on their own. These findings from a new study suggest that…
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The first time I ever heard from her or saw her name was March 2, 2009. She left a comment on my blog when I was in the depths of gripping fear and the deepest sorrow. These were her words to me then, when…
In a small study in Japan, the topical gene therapy Vyjuvek (beremagene geperpavec) was shown to work similarly to what was seen in an earlier U.S.-based trial, now safely and durably closing wounds for four Japanese people with dystrophic epidermolysis bullosa (DEB). The new data comes from an…
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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