The Fine Line Between Finding Purpose With EB and Letting It Define Me

The Fine Line Between Finding Purpose With EB and Letting It Define Me

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The Fine Line Between Finding Purpose With EB and Letting It Define Me

I live with epidermolysis bullosa (EB), a rare skin condition that makes my skin as fragile as the wings of a butterfly. That’s why we are called “butterfly children.” I like that name. It makes the disease sound beautiful and innocent, even if it is not. But it’s not all bad. You can definitely live a happy and fulfilled life with this condition. Butterfly child People always ask me, “What happened to you? Why are…

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