Raul's Hands

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Hands are often an issue for people with EB (especially recessive dyastrophic like Raul). We had not been wrapping his hands before, and they weren't wrapped in Romania, so the fingers have started to web and the fingers have started to curl down. About a month ago I decided to try doing the hand wrapping. There are certain methods used to keep the fingers from webbing/fusing. At first Raul would just rip them off as soon as I finished putting them, but finally I have found a method that works for him! And with this way his palms and fingers are unbandaged, so he is not losing any function. I think they are starting to look better! The skin is also improving because I wrap them with a bunch of aquaphor rubbed on his hands underneath. Hopefully this will keep us from needing hand surgery for a long time!

About two months ago in CO

His bandaged hand today


Hand today looking good!