Teen with butterfly skin completes marathon

Supported by mother and friends
  • Deborah Condon

A teenager whose body is covered in open wounds, due to the skin condition epidermolysis bullosa (EB), has completed her first VHI Women's Mini Marathon.

EB, also known as the butterfly skin condition, causes the skin to blister and wound at the slightest touch.

Claudia Scanlon (15), who is from Terenure in Dublin, has the severe form of EB, which means that 80% of her body is covered in extremely painful open wounds. As a result of the condition, she uses a wheelchair and has to be bandaged almost from head to toe every day to protect her delicate skin.

Claudia also has osteoporosis and is fed through a peg in her stomach.

However undaunted by her condition, she and her mother, Liz Collins, decided to complete the mini marathon. Friends helped to push Claudia's wheelchair and towards the end of the race, she got out and walked across the finishing line with her mother.

"The road bumps were tough, but it was a fantastic experience. I like to be as independent as I can and it's a great accomplishment for me to reach the finishing line," Claudia, who begins her Junior Cert on June 5, said.

Claudia and Liz and their friends did the marathon on behalf of the EB charity, Debra Ireland. It currently supports 300 people in Ireland living with the condition, by providing day-to-day help and support. It also funds research programmes in an attempt to uncover better treatments and a possible cure.

Liz has been running the marathon every year since Claudia was born, but this was the first time her daughter joined her.

"Every year I'd run with Claudia in my heart, but this year it's been so much better as we've done it together. Ten good lifelong friends who know Claudia and know the struggle of living with EB took turns pushing her wheelchair in relays of about five minutes each.

"We have received absolutely fantastic support. It is so uplifting to know that so many people have your back. It was particularly heart-warming to see so many people in the race wearing Debra Ireland's blue t-shirt and knowing that they are out there to support Claudia and every patient with EB," Liz said.

For more information on Debra Ireland, click here

*Pictured at the VHI Women's Mini Marathon are Claudia, Liz and their friends

 


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