Donations can be made:
firstname.lastname@example.org Or Mailed to:
32 Brighton Street
Staten Island, NY 10307
Hi. My name is John
Hudson Dilgen. I was born with a rare skin disease called
Epidermolysis Bullosa, or EB, which causes my skin to be fragile, to
blister and shear off easily.
I was born at New York University Medical Center on July 20th, 2002. To
the surprise of my parents and doctor, I was born with no skin on my
feet and left wrist. Luckily, a Pediatric Dermatologist was called in
who recognized my symptoms and quickly diagnosed EB.
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 expectancy 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 a cure 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.