https://donations.sosebkids.org/english daily 1.0 2020-09-30 https://static1.squarespace.com/static/5f616ecdad88f2560128c475/t/5f635b82b82a6d4d0d0a4dc7/1600221587307/SOS%2Beb%2Bkids-3.jpg English - What is EB? Epidermolysis bullosa (EB) is a rare and serious genetic illness, for which no cure has been found and it is characterized by acute sensitivity in the skin and mucosal membranes. https://static1.squarespace.com/static/5f616ecdad88f2560128c475/t/5f635b82b82a6d4d0d0a4dca/1600346917470/SOS%252Beb%252Bkids.jpg English - How is it to live with EB? EB patients live with pain every day. A simple touch or pressure on the skin or even just climatic changes can cause injuries, both external and internal. People with EB are lovingly called "butterflies", a reference to their fragile skin like the wings of a butterfly. https://donations.sosebkids.org/portugues daily 0.75 2020-10-27 https://static1.squarespace.com/static/5f616ecdad88f2560128c475/t/5f67970ff6f62d6a7888ec2d/1600221587307/SOS%2Beb%2Bkids-3.jpg Português - O que é EB? A Epidermólise Bolhosa (EB) é uma doença genética rara e grave, para a qual não foi encontrada cura e é caracterizada por sensibilidade aguda na pele e nas membranas mucosas. https://static1.squarespace.com/static/5f616ecdad88f2560128c475/t/5f67970ff6f62d6a7888ec30/1600346917470/SOS%252Beb%252Bkids.jpg Português - Como é viver com EB? Os pacientes com EB convivem com a dor todos os dias. Um simples toque ou pressão na pele ou mesmo apenas mudanças climáticas podem gerar lesões, tanto externas quanto internas. As pessoas com EB são carinhosamente chamadas de “borboletas”, uma referência à sua pele frágil como as asas de uma borboleta. https://donations.sosebkids.org/thank-you daily 0.75 2020-09-30 https://static1.squarespace.com/static/5f616ecdad88f2560128c475/t/5f6a6756a354713d8a5679ae/1600809289195/SOS+EB+kids+-+Child+with+EB Thank you Photo by Ana Paula Batista