Why Rangers + Liverpool legend is getting back in the water to help stop the pain of EB after health scare
Epidermolysis Bullosa, also known as butterfly skin, is a group of rare and incredibly painful genetic skin blistering conditions that affect an estimated 5,000 people in the UK
In June 2023, Rangers and Scotland legend Graeme Souness donned his wetsuit with an injured shoulder and swam the English Channel to help raise awareness of a rare genetic skin blistering condition known as epidermolysis bullosa (EB), more commonly known as butterfly skin.
His exploits captured the public’s imagination and helped raise over £1.5m for EB charity, DEBRA UK. Now an emotional Souness has been explaining why he is getting back in the icy water for a second time to take on his biggest challenge yet - almost seven months after undergoing an emergency heart operation.
In May, Souness and a team of six will be embarking on DOUBLE the distance for EB, swimming to France and back. The challenge has been set after Souness had a “couple of stents” put into one of his coronary arteries after having a “bit of a setback” at home last September. He has a history of heart trouble after previously being diagnosed with coronary heart disease at 38 and also a triple bypass.
Commenting on his latest fundraising challenge after appearing on BBC Breakfast this morning alongside EB sufferer Isla Grist, Souness said: “I come from a world where they talk about strong character and people who can dig in. But what Isla goes through and other children go through is beyond belief.
“There’s no respite from it, it’s every single day and her quality of life is diminished. She’s got a great family around here and DEBRA. We just do our best. We’re going to attempt a swim. I suggested after too much red wine one night... because the guys I saim with are quite persuasive, they are ex marines and they are proper guys. You can’t cut any corners with them. I’ll put it that way!”
He added: I was truly blown away by the support we got back in 2023. I had to do something for my wee friend, Isla, and the thousands of other children and adults affected by this cruel condition.
“With the money raised DEBRA was able to start testing drugs which could be life-changing for people with EB, but there are many more drugs that they need to test if we are to secure effective treatments for every form of EB, treatments that could help stop the extreme pain of EB.
“This is why we’re getting back in the water once again. It’s going to be tough; I’m 72 now and it’s double the distance, but I know we can do this, we must do this, we must BE the difference for EB.”
Time and tide depending, Souness and the team are due to hit the water in early May , and hope to raise £750,000 which could fund a further two EB clinical trials, which are focused on testing existing licenced drugs that already successfully treat other inflammatory skin conditions like severe eczema and psoriasis and which could be effective in improving the symptoms of EB including incredibly painful blisters and open wounds, and excruciating itch.
Epidermolysis bullosa (EB), also known as butterfly skin, is a group of rare and incredibly painful genetic skin blistering conditions that affect an estimated 5,000 people in the UK and 500,000 globally. EB causes the skin to blister and tear at the slightest touch.
EB can affect the hands and feet only or in the most severe cases any part of the body, including blistering on the eyes and internal organs. People living with EB live in constant debilitating pain. EB is currently incurable and in severe cases it can be fatal.
For more information about EB please visit www.debra.org.uk and to sponsor Graeme and the team please visit www.give.as/debra