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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.

Oct 5, 2026

GemmaHOST
9:18
You don't know what things are gonna look like, do you?
9:22
No.
9:22
No idea.
9:23
Uh, when I saw Ralph, because of my health anxiety, I started doing my own searches, um, that night, and I came across EB.
9:31
Um, and I said to my partner, "This is, this is lifelong.
9:34
I can feel it in my gut." And he said, "No, you're just being anxious.
9:38
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

GemmaHOST
41:14
But talk to me about the petitions and exactly why they're important.

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