Epidermolysis Bullosa vs. The California Stem Cell Program: Disease-a-week Challenge # 12


Try this. Take your right index finger and run it roughly across your left forearm. Nothing happens, right? You see the skin ripple, but it springs back like before.

But if you had a skin condition called Epidermolysis Bullosa ( EB), even that small touch could leave a blister, and soon break apart, exposing raw flesh.

When you first meet John Hudson Dilgen, (in the video “Boy with Butterfly Skin”,) he is wearing what appear to be white sweats. He is smiling and talking, a beautiful regular little boy, the kind who would be running around like crazy at the school playground, and last to come in from recess.

It takes a moment to realize the “white sweats” are bandages, which have to be changed every day.

The title “Butterfly skin” comes from the idea that EB skin is fragile as a butterfly’s wing, and that is not far off.

In a healthy child’s body, the layers of skin stick together by the body’s natural glue: collagen. In John’s type of EB, the collagen gene is missing or insufficient, and the outer layer (epidermis) can easily break away.

Any friction, however slight, can create a painful wound. When John was born, he had no skin on his feet from the trauma of child birth.

“Bathtime”, said his mother, was “heartbreaking, with relentless fear and screaming…”

He loved potato chips, but a rough or sharp food can be deadly for a child with EB, doing damage to the esophagus. Imagine being afraid to hug your child too hard, lest you break their skin!

Today John Hudson Delgin is 13, but the disease is still with him. If he rubs his eyes, the corneal erosion may require him to spend several days in a completely —> Read More