Siblings Nur and Muhammad are often referred to as ‘butterfly children’ because their skin is as fragile as wings. They were born with a rare skin condition called epidermolysis bullosa. | SBS News
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Siblings Nur and Muhammad are often referred to as ‘butterfly child…
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Epidermolysis Bullosa (EB), also known as ‘butterfly skin,’ is a devastating genetic condition that makes even minor friction cause wounds and scarring. The new documentary Matter of Time, premiering at Tribeca Festival, is spotlighting the urgent need for research and cures. If you or someone you know experiences unexplained skin fragility or blistering, early diagnosis can change outcomes. 📸 photo credit: Mayo Clinic & American Academy of Dermatology Book a consult: www.drannachacon.com | Ann
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Epidermolysis Bullosa (EB), also known as ‘butterfly skin,’ is a deva…
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Mark is 6 years old. He lives with epidermolysis bullosa—butterfly disease—a condition so fragile that even a soft touch can feel like fire on the skin. I asked his mother for permission to share the birthday message video here because it moved me in ways I still struggle to explain. It wasn’t just a greeting—it was courage, innocence, and extraordinary strength wrapped into a few precious seconds. Mark, thank you for your birthday message to me. Your smile, your bravery, your gentle spirit—they
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