The Butterfly Children: Living with Epidermolysis Bullosa

Article

Video diary depicting life with epidermolysis bullosa, a painful and potentially lethal blistering skin condition that affects thousands of children.

This video, “Garrett: The Boy Beneath the Bandages,” is “about Garrett and the disease he was born with, Epidermolysis Bullosa.” This video offers a unique and intimate “true to life view of what living day-to-day is like with a rare debilitating skin disease.”

Epidermolysis Bullosa (EB), is “a rare genetic skin disorder the majority of people have never heard of, yet it affects 100,000 children across the United States. Children born with this disease lack the ability to produce the collagen-7 protein that acts as a glue to bind the inner and out layers of skin together.”

Part 1 of the video:

Part 2:

Additional resources on Epidermolysis Bullosa:

eMedicine: Epidermolysis Bullosa

Epidermolysis Bullosa: An Overview from the Mayo Clinic

Epidermolysis Bullosa Medical Research Foundation

The Classification of Inherited Epidermolysis Bullosa (EB):Report of the Third International Consensus Meeting on Diagnosis and Classification of EB

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