Celtic legend Scott Brown inspired by Graeme Souness to tackle lack of nurses for sufferers of agonising condition

Celtic legend Scott Brown has been inspired by former Rangers star Graeme Souness to tackle a lack of nurses for sufferers of an agonising skin condition. Brown was enraged to find out there is just one specialist nurse in Scotland dealing with sufferers of the “butterfly skin” condition EB.

His Old Firm rival Souness has befriended teenage EB sufferer Isla Grist, 16, from the Black Isle, just outside Inverness, and is about to undertake a gruelling charity cycle for skin charity Debra in her honour. Now, Brown is planning to follow in the footsteps of his fellow Scotland midfielder to raise awareness of EB.

And he says the lack of specialist medics dealing with EB in Scotland is one of his main concerns. Speaking at the Scottish Parliament at a special reception for skin charity Debra, Brown said: “There is still a lack of awareness out there.

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Scott Brown at the Debra reception at Holyrood
Scott Brown at the Debra reception at Holyrood -Credit:Daily Record

“There are a lot of doctors who don’t even know what EB is. They are a little bit scared to diagnose it, to understand what it is, to understand what it means to a lot of families.”

Scott claims there is “not enough” being done for patients, with only one centre, in Glasgow, for the whole country. He said: “I can’t imagine how much it is costing people to come all the way down to Glasgow, especially during the cost-of-living crisis.

"The health aspect is huge. It is not just the physical, it is the emotional, it is being stuck in the house 24/7 and being reliant on your parents to do a lot for you.”

Brown has been inspired by Graeme Souness' friendship with Isla Grist, who suffers from EB
Brown has been inspired by Graeme Souness' friendship with Isla Grist, who suffers from EB -Credit:Jane Barlow/PA Wire

Brown also called for action to ensure those with the devastating condition be given prescriptions for life-changing medication Filsuvez. The Daily Record told exclusively in July how the drug had been approved for use in Scotland on the NHS. But to date not one single person is understood to have received a prescription for it.

Brown said: “I am lucky I can go home and cuddle my three children but there are parents who can’t give their child a cuddle or a small kiss on the cheek because of the blistering. I am not an emotional person, neither’s Graeme, but Debra hits home because of the love you have for your own children.”

Brown said it was essential the patients get Filsuvez, approved by the SMC as an ultra orphan drug. He said: “The quicker we can get them the drug, the better. In the last couple of months we have the new drug but we just don’t know how it is going to get used.”

Brown with EB patient Lisa Irvine
Brown with EB patient Lisa Irvine -Credit:Daily Record

Brown, now manager of Ayr United, told how he was inspired to get involved with the charity after Souness invited him to a recent Debra dinner in Glasgow. He said: “I watched Graeme on the stage and I obviously didn’t know too much about Debra and it was his emotion that pulled me towards this charity.

“I have never ever seen Graeme Souness break down until I saw him with little Isla... for me it was a huge thing. Everyone sees Graeme Souness as a hard footballer who sits on the telly and speaks out and desn’t care what anybody else thinks.

“But when you put Isla and him together, I see a bond I have never witnessed before. Graeme keeps in touch with Isla to see how she is getting on. It is heartbreaking.”

Isla with dad Andy and mum Rachael.
Isla with dad Andy and mum Rachael. -Credit:Northpix

Both SNP MSP Bob Dorris, who hosted the event, and Public Health Minister Jenni Minto urged Debra to seek Scottish Government funding. Dorris said: “We have a new financial year coming up and we know the situation is challenging on the public purse.

"But one of the things I want to do as a parliamentarian is ensure when monies are distributed that Debra finds themselves bidding for those funds to try to win research budgets.”

Isla and Souness have become firm friends since his involvement with the charity. Last year, he swam the Channel with her dad and a group of military personnel to raise funds and awareness. This month he will take part in the cycle leg of the latest challenge after a shoulder injury ruled him out of another swim.

Brown plans to help raise funds and he said the Debra event planners are working on ideas. He addded: “So long as it is not anything to do with heights, I’ll be up for it.”

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