What is EB?

Epidermolysis bullosa (EB) is a rare and serious genetic illness, non-contagious, for which no cure has been found and it is characterized by acute sensitivity in the skin and mucosal membranes. Patients with EB develop blisters and sores in response to the minor types of skin trauma, a mere touch upon or pressure to their skin, or even just changes in weather. These lesions can be both external and internal and can appear inside the mouth, in the esophagus and the rectum.

Currently, there is no cure for EB. Supportive care includes daily wound care, bandaging, and pain management as needed.

Patients of EB are affectionately referred to as “butterflies,” a reference to their fragile skin.

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Photography by
Aline Inagaki | Marcela Melo | Vanessa Brandhuber

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