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Ciara Burnside
EB awareness campaigner and mother of Ralph, a baby with Epidermolysis Bullosa (butterfly skin), sharing their journey on TikTok and Instagram and campaigning for better EB research and funding.
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APPEARANCES
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PODCASTS
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Oct 5, 2026
54: Ciara Burnside: Navigating a Diagnosis of Epidermolysis Bullosa (Butterfly Skin)
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9:18GemmaHOST
You don't know what things are gonna look like, do you?
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9:23Ciara BurnsideGUEST
Uh, when I saw Ralph, because of my health anxiety, I started doing my own searches, um, that night, and I came across EB.
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9:38Ciara BurnsideGUEST
It's going, it's, everything's going to be fine." And then when, when we were told, so, um, the Great Ormond Street nurses came a few days afterwards, and they said that they heavily suspect that it is definitely EB.
31 MINS LATER
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41:14GemmaHOST
But talk to me about the petitions and exactly why they're important.