It is estimated that 1 in 50,000 people in the U.S. have some form of EB, yet almost nobody has heard of my disease.
I spent the next nine days in the N.I.C.U. while a biopsy was done which determined I had Dystrophic EB, one of the three major types of EB.
My diagnosis of Recessive Dystrophic Epidermolysis Bullosa (RDEB) was confirmed when I was 16 months old. RDEB is one of the more severe forms of EB. It is characterized by loss of fingernails and toenails, anemia, failure to thrive, and difficulty eating and swallowing. Blisters also affect the eyes, mouth, esophagus, as well as the internal organs.
With so much love and support working on my behalf, I know a cure for EB will happen one day. Right now, the doctors say there is not a cure. If I survive infancy and my toddler years, I face a lifetime of surgeries, infections and hospitalizations.
The life expectance for kids like me is about 40 years, which is the average age when most kids with RDEB succumb to squamous cell carcinoma. The sooner gene therapy becomes a reality, the sooner this terrible disease will all be a bad memory for me and my friends.
Thank you for taking the time to read this. God Bless.
