Shane: Dystrophic

My name is Shane, and I am a 18 year old guy who loves Star Trek, space, and science. 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 hope to become an aerospace engineer or an astrophysicist so that I can study space or design spacecraft. I love science and space, and I plan on going either to Caltech or Stanford, both of which have good space related programs. However, I face enormous difficulties because I cannot be independent with my wrecked hands and fragile skin.

However, I am lucky that I even have a chance 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.