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Other terms used to describe those affected include "butterfly children" as the skin is fragile as a butterfly's wings, "cotton wool babies", or "crystal skin children". References
13 de abr. de 2015 · The Butterfly Child | TSN Original - YouTube. TSN. 610K subscribers. Subscribed. 36K. 12M views 8 years ago. 14-year-old Jonathan Pitre is an avid hockey fan who suffers from Epidermolysis...
4 de may. de 2018 · 330. 30K views 5 years ago. Jonathan Pitre was born with “the worst disease you’ve never heard of”, a rare and excruciatingly painful skin disorder called Epidermolysis Bullosa. But through...
23 de feb. de 2022 · People born with this condition are often called “butterfly children” because their skin is as delicate as a butterfly’s wings.
18 de sept. de 2023 · Epidermolysis bullosa is a genetic condition that makes skin so fragile that it can tear or blister at the slightest touch. Children born with it are often called “Butterfly Children” because their skin seems as fragile as a butterfly wing.
In our new explanatory video "Butterfly Children", both the cause and the consequences of the disease are simply explained. This video was created by DEBRA Austria. It is available for DEBRA Groups for translation (subtitles only or audio and subtitles) and adaption of the last slide with the donation details at a low cost.
In many languages, children living with Epidermolysis Bullosa are often called "butterfly children", comparing the fragility of skin with that of butterfly wings. While skin fragility is a common feature of all EB types, the characteristic symptoms and severity, and hence prognosis and treatment, vary greatly from one type to another.
