Shane: Dystrophic

My name is Shane, and I am a 23 year old guy who loves Star Trek, space, and business. For a few seconds, it’s possible to forget that my body is covered with large wounds, places where my skin has sheared off, a result of my skin condition, Epidermolysis Bullosa (EB).

No matter how much I want to be normal, EB haunts me and affects everything I do. I cannot open doors, walk long distances, eat crunchy foods, hold large things . . . the list goes on.

I am wracked by never-ending debilitating pain that cannot be helped by anything other than the strongest painkillers, which I choose not to take because they cloud the mind. Ibuprofen helps slightly by reducing the inflammation that hurts my body.

Even though my body is scarred by my condition, I recently graduated from Rice University with a degree in Economics. I’m hoping to use my degree to help others in whatever way I can. Additionally, I started a motivational speaking business called ShaneTalks to use my experience with EB to help others overcome their challenges (visit ShaneTalks.com to learn more!). However, I still face enormous difficulties because I cannot be independent with my wrecked hands and fragile skin.

I am very lucky that I was able to go to college. Many others with my condition cannot go to school or even leave the house. We, the butterfly children, need a cure desperately so that we can lead a normal life, whether that means going to college or school or even leaving the house or the wheelchair.

- Shane