A former Blackburn Rovers manager has paid tribute to a girl, and others like her, living with a rare and painful skin condition.
Graeme Souness, described as one of the most successful Rovers' managers in recent decades, leading the club back into the Premiership after they were relegated in 1999, is taking on a challenge to raise funds for DEBRA UK.
He will be raising money and awareness for people living with epidermolysis bullosa (EB), also known as butterfly skin. It is the name for a group of rare inherited skin disorders that cause the skin to become very fragile. Skin can blister and tear at the slightest touch.
Graeme Souness (Image: DEBRA UK)
This September, Graeme will be cycling 85 miles from Dover to London. He was initially set to swim the Channel, there and back, but has had to cancel this aspect of the challenge due to injury.
Graeme, 71, said: “It’s going to be tough for sure. I [can no longer] physically do the swim as I still haven’t recovered from my shoulder surgery earlier in the year.
"[Because I can’t] swim, I’ll ride, I’ll do whatever I can, I have to. We need everyone to play their part to BE the difference for EB.”
Graeme has been speaking with his friend Isla Grist, 16, who is living with EB.
He said: “[During the challenge] I’ll be thinking of my friend Isla and the thousands of other children and adults who are living with the pain of EB right now. We can make a difference to their lives today and tomorrow, please join us.
“I’m hoping you can get behind us again in this challenge. Please join me in helping us provide community support to improve the quality of life for those with EB today. And for tomorrow, research into effective drug treatments to help stop the pain.”
- READ MORE: Former Blackburn Rovers boss Graeme Souness awarded CBE
Isla has spoken to various news outlets about living with EB.
She said: “Every morning I have to check my bandages are still in place. It takes about 20 minutes each morning. Three times a week I have to change all of my bandages and that takes around five hours. I have had sleepless nights [due to the itching] and pain.
“There are so many people in the UK and across the world who have this and no one knows about it.”
Last year, Graeme and the team swam the 30-mile stretch of the English Channel to help stop the pain of EB. Thanks to the support of thousands of people from all over the UK and abroad, DEBRA UK was able to start its drug repurposing journey with the first EB clinical trial being commissioned.
You can support Graeme's challenge by visiting: www.debra.org.uk
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