Shorters of this company should visit Debra website. Pictures of the damage inflicted by the worst condition I ever heard of are harrowing, and still the children trying their best to smile.
As I expected, in various forms of EB gut symptoms are common: reflux, diarrhea, constipation, thought to be due to mucosal fragility. Freeman et al (2008) found GI problems in 130/223 children.
JCR's intention to expand to IV admin is imo a very good idea. I take this as an indication of our cells' potential to improve integrity of gut as well as of skin.
(There is also an acquired form of EB that can occur in SLE, Crohns UC but it's said to be extremely rare.)
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