Originally Posted by
VeeDubb65
Thanks for the links, I'll pass them along. (Like I said, I lucked out and didn't get the gene)
Since my entire family lives in Oregon, Stanford is more than a little out of the way, but I'll take a look through and see if any of my fmily members are interested.
I get a little bit mixed up on the types, as there are several variations of the disease. The form that runs in my family is the non-lethal type that still allows people to lead a more or less normal life. One of my brothers for instance, actually worked for a number of years in a machine shop in spite of the disease. Just just had to wear shoes that were a size too big with multiple pairs of seamless socks so he wouldn't get blisters on his feet from standing all day.
For anybody who has no idea what we're talking about, the two main layers of the skin are the dermis and epidermis. In "normal" people, these layers are anchored together with a particular type of collagen. In people with EB, the body either under produces that collagen, produces a malformed version of it, or doesn't produce it at all.
That means that something that might give you a tiny little friction rash, like playing basket ball in new shoes, or spending too much time honing, would cause somebody with EB to break out in large, deep, painful blisters.
Something that would make you or I get a small blister on the ball of the foot, would cover the soles of the feet in debilitating blisters that would heal slowly.
They are also generally not able to form callouses.
In the more severe form, where the body doesn't produce any of that particular collagen, even slight friction can literally tear a person's skin apart.
One of my sisters met a 10 year old boy with the "severe" form when he started public school. (He was kept out of public school until that age for safety) In a playground when he was 6, another child had tried to give him an "Indian burn" on his forearm, and had torn most of the epidermis off his arm from the elbow to wrist.