The case of John Hudson Dilgen

John Hudson Dilgen is a wonderful boy who was born with a rare, genetic skin disease called Recessive Dystrophic Epidermolysis Bullosa

This is a tear-jerking interview by the YouTube channel, Special Books by Special Kids, on John regarding his disease.



John Hudson Dilgen was born at New York University Medical Center on July 20th, 2002. To the surprise of his parents and doctor, he was born with no skin on his feet and left wrist. Luckily, a Pediatric Dermatologist was called in who recognised his symptoms and quickly diagnosed it as EB.

It is estimated that 1 in 50,000 people in the U.S. have some form of EB, yet almost nobody has ever heard of John's disease.

John spent the next nine days in the N.I.C.U (Neonatal Intensive Care Unit) while a biopsy was done which determined that he had Dystrophic EB, one of the three major types of EB.

John's diagnosis of Recessive Dystrophic Epidermolysis Bullosa (RDEB) was confirmed when he was 16 months old.

The life expectancy for kids like John 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 John and his friends.