I think that's why I get dirty looks as I park my car in the handicap parking spaces at stores, school, or church.
I almost feel like apologizing for being born with Epidermolysis Bullosa (EB). And trying to explain it makes it even
worse. Everybody I've tried to explain it to aren't interested in the facts...they are just interested for some juicy
reason for why I'm sometimes in a wheelchair...or why I limp around school. They dismiss what I tell them as soon as
I leave, and the next time they see me in a chair, it's always the same question:
"What's wrong with your legs?"
The answer is (and always has been): Nothing. Nothing is wrong with my legs (particularly). I have a genetic
skin disorder that affects my entire body, some places more than others. My feet are the usual victims. Walking
two blocks in the summer will produce many large blisters on each foot. (For example, I went to a graduation recently
and now I have 8 blisters on my right foot and about 10 on my left.)
What is the worst part about EB?
The worst part of EB is the lack of awareness. I'm not sure how accurate this number is, but I heard once that
only 1 child in every 100,000 born each year might be afflicted with it. A parent who suffers from EB has a
50% chance of passing it to their children. My grandmother had ten children: four were born with EB--one being my mother.
My mother had two children: I was born with EB, my sister was not.
When my mother was growing up, the medical community had not even recognized EB as a skin disorder. Whenever my
mother would go to the doctors to have them diagnose her unexplainable blisters, the doctors would take one look at her feet
and tell her she was wearing the wrong type of shoes. When she was older, she became very tired of this old excuse and
when another doctor told her the same thing, she lifted her hospital shirt to reveal a line of blisters that were caused by
the elastic of her bra. "Are these from wearing the wrong shoes too?" She asked. The doctor finally admitted
that he didn't have an answer.
An answer came to her in the form of her youngest daughter--me. My sister had never shown signs of blistering,
but when I was born, my fingers were blistered from sucking on them while I was in the womb. "She HAS IT!" My
mother exclaimed. The doctors didn't know what she was talking about, even after she tried explaining the symptoms.
They decided they needed to do a biopsy. My mother, being the heroine that she is, refused to let them do a biopsy on
her new-born child, and made them do one on her. When she heard the words "Epidermolysis Bullosa", she cried happily...The
doctors finally had a name for what she had been fighting for her entire life. Perhaps her daughter would have an easier
life than she.
Well, I did and I didn't have a better life. While I was growing up, I had a pediatrician who knew about EB and
knew how to treat the blisters, but that didn't stop them from coming. I remember sitting in my living room, in front
of my mother with my feet extended while she cut open my blisters with scissors. (We tried popping them with pins, but our
form of blisters can't remain deflated with a small hole.) I called it "surgury" and when I was really young, I would
have to miss school a day before "surgury" was performed, and usually a few days after. I was taken out of P.E in the
seventh grade (after I just stopped going) and I was given a wheelchair so that I would stop missing school.
My senior year in highschool, my appendix burst and I was put in the hospital. The IV tape created blisters on
my arm and the hospital bed formed a line of blisters from my shoulders down to my butt. The hospital was stunned and
didn't know what to do. I was handing out strips of paper that read "Epidermolysis Bullosa: EB....DEBRA" like it was
a hot autograph because the doctors, nurses, and interns wanted to look it up. I must have met thirty people working
in the hospital who had never heard about it.
That's when I decided to promote EB awareness.
