25-31 Oct 2021

 “I want to spread awareness about mental health because it’s so important.”

What is EB?

  • EB = Epidermolysis Bullosa. A severe rare genetic skin blistering condition.
  • EB = Extraordinary Butterflies. EB skin is as fragile as the wings of a butterfly.
  • EB = Endless Blistering. Even gentle skin contact causes devastating wounds.
  • EB = Excruciating Bandaging. When dressings stick, the skin often comes away too.
  • EB = Exhausting Battle. There is no cure and a high risk of developing aggressive skin cancer.
  • EB = the worst disease you’ve never heard of.

The side to EB that nobody sees

Claudia Scanlon, the brave 17-year-old you might have seen on The Late Late Show, has been willing to share her struggles. “I hope my sharing may help people relate, not feel ashamed about struggling with their mental health, and ask for help. I want to spread awareness about mental health because it’s so important.”
It’s hard being a teenager. But being a teenager with EB brings so much added challenge and distress. Claudia tries her best not to dwell on her situation. She says, “Live, love and laugh!”

“Mental health is severely affected when you have a disability. I struggle with depression and anxiety. It’s a constant up and down battle. I’m getting help, but it’s hard. There are so many people who love you and want to help. But when mental health is low, we push
people away. Then it feels as though nobody is there for you at all. It can be so isolating.”,

“If people are struggling, I hope they’ll find a way to reach out. They need to know they aren’t alone, and people care. I care.”