In 1976 I was born with Epidermolysis Bullosa (EB). EB is a very rare genetic connective tissue disorder which affects 1 in every 20,000 births each year. Children born with this disease are termed “Butterfly Children” because the skin is so fragile it blisters and tears from friction or trauma. There is no cure or treatment – only management through daily wound care with protective bandages and pain management. I do however consider myself one of the lucky ones, as children born with the more severe forms of EB live with disfigurement, disability and early death. Some children pass in just the first few months of their lives. At 37 I feel blessed to have lived the life I have, and seek to help educate the public about this disease as a tribute to those who have passed before me.
The last week of October each year is EB Awareness Week, so I am glad to tell my story here from the eyes of a son with EB. My mother gave birth to her oldest child, a daughter, in 1968, but something was just not right. Her skin was too fragile and it was tearing with the slightest touch. As you can imagine, there was little known about the disease my sister had, and teams of doctors were called in from New York City to help with the diagnosis. Junctional EB was the verdict, which is one of the more severe forms of EB. This new mother was about to start her family with a very large hurdle. She was told that the disease was so rare the odds of another child with EB was very slim so she tried to have another. A second daughter was born in 1972 and perfectly healthy. Encouraged by this she tried for the boy that she had wanted and I was born into the world in 1976.
All seemed well at first and the doctors were sure that I had escaped the clutches of this genetic condition. After a few days I was released from the hospital with just a small blister on my rear end which the doctors said not to worry about. Shortly thereafter the cruel reality set in for my parents that the disease had not in fact passed me over. Two children under 10 with a disease so rare there were no treatments only tips and tests from teams of dermatologists and research groups. Depression, sadness, self-pity, and blame were the overwhelming emotions that my mother had felt during these early years. Mainly because she had tried to have more children and put those lives at risk.
This is however the story of a disease that made my mother the strongest woman that I know. How she dealt with parenting a child with issues no other parent she had known before would have to deal with. The unknown future of her children’s lives and how she could make them as normal as possible. Thinking back this must have been so difficult for her with no support groups or internet chat rooms to help. We made bi-monthly trips into Manhattan to visit DEBRA which is an EB research group formed to help patients and their families. My sister and I were two of the first patients they helped and we are glad to give back now and help them. They taught us wound care and helped my mother to understand how to deal with the painful ordeal of daily bandage changes. Today it is an hour long process for me to get undressed, bandages removed, showered, and bandages reapplied. Remember two children under 10 that needed this care each day, and it is painful. Imagine a mother that has to hurt her children for two hours each day, and the guilt she must feel.
My mother was strong and she made us stronger. We were extremely loved but not coddled or treated like we had a disability. I remember her telling me I didn’t have a disease and it was just a skin condition and to keep fighting and not let it get me down just because I was different. How was she not crushed when I came home asking to try out for football with the rest of my middle school friends and she had to tell me no. Or when schoolmates would bully me which seemed to be a daily occurrence when you are different, and she had to talk me into going back to school. Her strength made us stronger and able to cope with now common issues in children with a very uncommon cause.
I wanted to take the time to write this to help raise awareness. The ignorance towards this disease is still evident in my life today. Just a few short years ago while on a business trip I was asked to leave a hotel because my wounds stained the sheets and the hotel staff was uncomfortable. Myself and the families of those also affected by EB ask for your help to raise awareness. As mothers you may have a child with EB one day or at least meet someone who does. A schoolmate of one of your own children perhaps. If I can help educate you on the pain and the struggle that a child with EB has to endure you might be less likely to treat them differently. You can help your children better understand the disease and how they shouldn’t be afraid.