WHAT IS EPIDERMOLYSIS BULLOSA?
Often referred to as the worst disease you’ve never heard of, Epidermolysis Bullosa is a rare, genetic skin disease that causes catastrophic blistering and fragility of the skin and mucous membranes.
- Patients with EB live in severe chronic pain and often experience limited mobility and a shortened life span.
- EB is rare, affecting only one in 50,000 people, or about 200 births a year, in the United States.
- While there is no cure, there has been meaningful progress made in cell therapy, gene therapy and protein replacement therapy efforts that can, hopefully, lessen the impact of EB.
Dystrophic EB occurs when the protein that holds the skin layers together is missing or flawed.
Without this protein, the skin easily blisters and sloughs as a result of minor friction, leaving severe wounds on the skin and often in the lining of the skin inside the body.
Children’s Hospital Colorado is home to one of only three multi-disciplinary Epidermolysis Bullosa clinics in the country with some of the field’s leading experts on staff treating patients from all over.
The Butterfly Children Fund is proud to partner with the EB Clinic physicians and staff to provide support to these families of children with EB.
QUESTIONS?
Contact Susie Warta @ (303) 523-4297 or email butterflychildrenfund@gmail.com
630 Glencoe Street, Denver, CO 80220, US