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13 de abr. de 2015 · 14-year-old Jonathan Pitre is an avid hockey fan who suffers from Epidermolysis Bullosa, one of the most painful conditions known to modern medicine. But his courage and determination to live...
4 de may. de 2018 · 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 courage, bravery, and an ...
28 de mar. de 2022 · They’re known as butterfly children, people born with skin so fragile that a simple touch can create wounds that may never fully heal. Now, in a small study of patients with the rare inherited disease epidermolysis bullosa (EB), researchers have used a DNA-carrying gel to help mend their skin.
1 de nov. de 2022 · Author-illustrator Marc Majewski delivers a gorgeously painted, tender story about a young child who loves dressing up as a butterfly. A joyful celebration of creativity, self-expression, and family—perfect for fans of Jessica Love and Beatrice Alemagna.
'What is a butterfly child?' - easily explained. Epidermolysis Bullosa - the disease that determines the everyday life of butterfly children - is a very complex topic. In order to communicate this topic briefly and easily understandable, pictures with a lot of expressiveness help.
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. Living with epidermolysis bullosa can be difficult, and it...
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.
