From the Perspective of a Husband

From the perspective of a husband who has a wife and friends with Epidermolysis Bullosa (EB), I believe that although EB is an unquestionably challenging disorder for people who have it, EB is essentially a skin condition that functions as a disguise. Underneath the veil of sores and blisters is an angel of power and warmth—at least, that’s what I’ve seen in my wife and friends.

I believe it’s safe to generalize and say that whoever is faced with this genetic adversity in any of its forms (Dystrophic, Recessive, Junctional, and Simplex) experiences a variety of opportunities for growth and achievement seldom available to others without EB. I’ve noticed that the hardships and triumphs they encounter tend to fashion a character of enduring fortitude, compassion, and excellence. The resulting temperament has an impressive impact for good on those around them.

It’s been our experience that people observe those struggling with EB and can’t help but experience a feeling of awe and admiration. Frequently, people comment that they have a renewed motivation to withstand their own problems and a resolve to be more optimistic in overcoming their struggles.

So, while on the surface the condition appears very debilitating, it is actually quite enabling for EB survivors and those who associate with them. The goal of USeb is to uncover and develop these inherent abilities to benefit those with EB and society.