What is epidermolysis bullosa? Graeme Souness to swim Channel for girl with ‘butterfly skin’ condition

What is epidermolysis bullosa? Graeme Souness to swim Channel for girl with ‘butterfly skin’ condition

Graeme Souness will swim the English Channel to raise £1.1 million for DEBRA’s A Life Free of Pain and awareness of an associated rare skin condition.

The former football player and manager, who is now a pundit for Sky Sports, is taking the challenge after befriending Isla Grist, a 14-year-old with epidermolysis bullosa (EB).

“This disease... it’s the cruellest, nastiest disease,” said Souness, who played for Liverpool and Scotland in the Eighties before managing the Reds in the Nineties. “This is a very special young lady you’re in the company of, she really is, and I am… she gets me in tears every time I’m in her company.”

Souness is now 70 but has kept in good shape since his final managerial job with Newcastle in 2006 and will complete the 21 mile-swim with Isla’s father, Andy Grist, on June 18.

DEBRA’s A Life Free of Pain is aiming to raise £5 million by the end of 2023 to develop treatments that will enable people to live free from the pain of EB.

To donate to the cause and sponsor Souness, click here.

What is epidermolysis bullosa (EB)?

EB is a painful genetic skin-blistering condition that can be known as ‘butterfly skin’.

It causes skin to blister and tear easily on the hands and feet or, in severe cases, any part of the body, including the eyes and internal organs.

The NHS describes it as an autoimmune disease, where the immune system starts to attack healthy body tissue. It is extremely rare but typically affects people over 40 years old.

Scotland-based Isla has had the condition since birth and is in frequent-to-constant pain, needing to be wrapped head-to-toe in bandages. She does not have functioning fingers and needs to take 17 drugs, including ketamine, every day for the excruciating pain of having her bandages changed. Going to the toilet is a struggle and she cannot dress herself.

Andy Grist said: “It’s hard for Isla, the blisters she’s got all over her body and the raw skin. Up to half her body is not covered in skin.

“It not only affects the external parts of the skin you can see, it affects the internal linings as well, and that’s blistering and tearing of the skin inside your throat and the like and it’s relentless. It just doesn’t stop.”

There is no cure for EB, so treatment aims to relieve symptoms and prevent complications or infections. It can take hours per week to dress scabs and blisters.

Further support and guidance can be found from the NHS and DEBRA.