Blog · March 9, 2015

This is RDEB

Nicky's upper left thigh as of today

Nicky’s upper left thigh as of today

I don’t take any perverse pleasure posting this picture, but I learned long ago that RDEB (Recessive Dystrophic Epidermolysis Bullosa) cannot be explained, it can only be shown. And even while posting this photo I cannot show how easily the skin peeled off, or how hard it was to re-wrap, as the upper thigh is extremely hard to bandage because the bandages themselves shift and move endlessly.

I am not posting this to evoke sympathy or pity. I am posting it to open a door into our lives to help others understand, to educate and build acceptance for children and adults living with this condition.

Follow Nicky and his journey, living with RDEB here–>

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Love & Light,