In June 2023, football icon Graeme Souness CBE made headlines when he braved the icy waters of the English Channel, raising awareness and funds for the rare and devastating skin condition, epidermolysis bullosa (EB), often referred to as butterfly skin.
His courageous feat struck a chord with the public, helping to generate more than £1.5 million for DEBRA UK, the national charity supporting those affected by EB. Now, Graeme is diving back into action—this time, setting his sights on an even greater test.
This May, he and a team of six swimmers will attempt a double Channel crossing—swimming from the UK to France and back—all to support research into treatments that could ease the unbearable pain caused by EB.
Speaking about the upcoming challenge, Graeme said:
“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.”
The swim is scheduled for early May—weather and tides permitting—and the team is aiming to raise £750,000. The funds will support two new clinical trials exploring the use of existing drugs, already approved for other severe skin conditions like eczema and psoriasis, that may also relieve symptoms of EB such as agonising blisters, open wounds, and intense itching.
To find out more about EB, visit www.debra.org.uk, and to support Graeme and the team, please visit www.give.as/debra.
