I sat on my couch, staring at my hands, on a summer day, five years ago. Six blood blisters dotted my fingertips like they had been carefully placed there by an artist brush. The blister on my left thumb was at least a quarter inch in diameter but since I’m right handed it was not a big issue except the pain. The five on the right hand made it hard for me to type or hold a spoon or a pen.
As I held my hands to an ice bag, I watched my son crawl by. What was odd about that you ask? My son was nineteen years old and had so many blisters on his feet that crawling was easier than walking. Well, that’s not totally true since he’s six foot four inches tall and trying not to let his feet touch the ground.
As my son crawled by, I was transported back to my youth, and a seventeen year old girl crawling through her parent’s house.
“Get up Jennifer,” my mother said, “Walk. Don’t crawl.”
“It hurts too much.” I whined, but slowly pulled myself to my feet.
Carefully I placed one foot in front of the other, twisting each in an attempt to find the spot with the least blisters to take the pressure off of each step. I made it into the kitchen, got something to drink and sat at the table. My feet would throb as the pressure was taken off and the blood flow and heightened nerves combatted to bring normalcy to my body. Several days in Florida on a senior trip brought me to this place.
Epidermolysis Bullosa is a group of skin conditions whose hallmark is blistering in response to minor injury, heat, or friction from rubbing, scratching or adhesive tape. Four main types of Epidermolysis Bullosa exist, with numerous subtypes. Most are inherited.
Most types of Epidermolysis Bullosa initially affect infants and young children, although some people with mild forms of the condition don’t develop signs and symptoms until adolescence or early adulthood. Mild forms of Epidermolysis Bullosa may improve with age, but severe forms may cause serious complications and can be fatal.
There’s currently no cure for Epidermolysis Bullosa. For now, treatment focuses on addressing the symptoms, including pain prevention, wound prevention, infection and severe itching that occurs with continuous wound healing.
Epidermolysis Bullosa Simplex (EBS) is the name they have placed on our problem. This genetic skin disease, which affects 25 to 50 thousand Americans, is caused by a faulty encoded gene that affects the protein that holds the layers of skin together causing a “blistering” breakdown of the skin.
My son and I are the fortunate ones; our strain of EBS, also known as Weber-Cockayne disease is one of the mildest forms and our blisters are mainly formed on the hands and feet. Other strains can cause blistering all over the body and internally, scarring and death. I call Weber-Cockayne disease an invisible disability because basically it is not seen by others.
An invisible disability. The word “disable” according to Webster’s dictionary means, to make powerless or incapacitate. That would imply something conspicuous because don’t you notice someone that is incapacitated? EBS, like back problems, fibromyalgia and lupus, is invisible. It affects the way people live, but is not apparent to the naked eye.
I am an adult now and know added pain, the pain of watching my son go through the same process I did many years ago. My father talked of roller skating all evening as a teenager and being carried home because he could not walk. EBS did not stop him.
I enjoyed a fairly normal life even participating on the high school track team and church softball team in a limited capacity for EBS could not stop me. Today I am proud of my son as he has married, works in management, and leads a fairly active life. EBS has not stopped him either.
An invisible disability. What I am finding out is many of us have these; my friend with lupus, the one with fibromyalgia, and my husband with arthritis in his back. Each one is a tribute to perseverance, not letting the disease win. EBS will not win in my family either. We will live life in abundance, to the full, until it overflows.
What about the characters in your book? Are they real people, with real aches and pains? Or are they cardboard cutouts that are perfectly healthy with perfect bodies? A great way to draw the reader in and bring empathy into any story is through an invisible disability. Let your reader connect with your character as they struggle with him or her.
Today’s writing prompt: Janice perched on the bench in the park, rubbing her knees as the joints throbbed from the half-mile walk. She blinked back angry tears. Why did twenty-year-old body react to exercise like a sixty-year-old? The doctor told her…
http://www.debra.org/ Epidermolysis Bullosa (EB) — The Worst Disease You’ve Never Heard Of.™