Souness: 'We will win the fight against rare skin condition'

Graeme Souness is taking on another mammoth challenge to help people like Black Isle teen Isla Grist who has EB

(L-R) Graeme Souness with Isla Grist who has EB
Author: Liam RossPublished 24th Jul 2024

Former Scotland, Liverpool and Rangers legend Graeme Souness is adamant they will win the battle against an excruciating skin disorder.

Souness will take on part of a mammoth swim and cycle challenge, fundraising to help those with Epidermolysis bullosa (EB) which is also known as butterfly skin.

He was initially inspired to swim the channel last year, after meeting Black Isle teenager Isla Grist who has the condition.

After more than £1.5 million was raised through that challenge, Graeme and Isla are hoping this even bigger test will help those with EB.

'Everything about EB is so hard' - Isla Grist

EB is a rare genetic disorder which affects the skin, making it extremely fragile and delicate.

Even minor friction or trauma can cause the skin to blister and tear, leaving sufferers in excruciating pain, and with unbearable itch.

In the worst cases, EB can be fatal.

There is currently no cure for EB and according to the charity DEBRA, around 5,000 people in the UK currently live with the condition.

16-year-old Isla described what it's like to live with.

She said: "Every day I wake up and I have to check my bandages are in place.

"That can take from 5 to 20 minutes.

"Then three times a week I have all my bandages changed.

"It's just so much pain and it's so hard to sleep at night.

"You can't be in the sun for too long, everything about it is so hard."

In June last year Graeme, Isla's dad Andy and a courageous team swam the English Channel, raising £1.5m to help those with the condition and making millions aware of what it is.

Graeme is now the Vice President for butterfly skin charity DEBRA and has since been awarded a CBE for his services to football and charity work.

This September, a hardy bunch will swim the English Channel there-and-back, before cycling 85 miles from Dover to London.

Due to a shoulder injury, Souness won't be taking part in the swimming section of this year's challenge, but will still be cycling.

Isla and Graeme agree they've made good progress over the last 12 months, but more work is needed.

Isla added: "It really has opened a lot of doors, so we don't have to fight quite as much."

Graeme continued: "We're in a fight and it's a fight we have to win.

"It's not going to be a short fight, it will be a long fight, but we're in for the long fight and we will win.

"Last year, I played my part and swam the 30-mile stretch of the English Channel to help stop the pain of EB. The support and dedication from the British public blew me away.

"However, there is still so much more to do for people living with the excruciating pain of EB.

"We need to raise more money to support the EB community, today and tomorrow.

"To ‘BE the difference for EB’ this year, it’s going to be tough for sure, but I will be thinking of Isla and the thousands of other children and adults living with the pain of EB."