Scots 'butterfly girl' opens up on daily struggle with painful rare skin condition
EXCLUSIVE: Isla Grist lives with epidermolysis bullosa, which she describes as a "constant battle".
Teenager Isla Grist has opened up on the constant struggle she faces living with a rare genetic skin blistering condition.
Isla, 16, also thanked her football legend pal Graeme Souness for his help in raising awareness of the painful disease known as butterfly skin.
The former Rangers boss recently swam the Channel for epidermolysis bullosa charity DEBRA.
Souness and fellow Old Firm hero Scott Brown – also an ambassador for the charity – have now asked people to sign up to Join Team EB and do their own challenge.
Isla, from the Black Isle, near Inverness, said: 'Living with EB is a constant battle. It is painful. Inconvenient. It's a horrible thing to live with. I'm itchy and in pain all the time.
'I can't do things normal people do, like walk unaided and hold a cup of tea. I spend a huge amount of time getting my bandages changed and going to hospital appointments.
'I just want to lead a normal free from the incessant itch and pain. It is intolerable.'
But the inspirational teenager said that it helps to know that the public want to support her and hopes the challenge campaign spreads awareness so more people understand her condition.
She said: 'I think that it's great that people in Scotland want to get involved and spread awareness of EB.
'Graeme and I are both proud to be Scottish and would love the nation to do whatever they can.
'If you are thinking about a challenge, just do it, every little helps. Thank you for being part of the battle against EB.
'It's important for people to talk about it. The more people that know about EB and understand how painful it is, the easier it is for those of us living with EB.
'So many people have been so kind, supportive and generous which makes me very grateful.'
Isla helped Graeme through his recent double swim of the English Channel, when he was struggling at the mid-point and a call from her spurred him on to finish the gruelling task.
She said: 'It made me feel blessed that I could do that for him, and help get him to the finish line.
'I feel very privileged that he has done these challenges on behalf of me and all of the EB community.'
Graeme, 72, said: 'I was seriously flagging in the middle but a call from Isla really gave me the boost (and perspective!) I needed to forge on.
'She was having her gruelling five-hour bandage change but typically for her, she still wanted to call me to spur me on.
'This is why we are doing this – and it's why we are now asking anyone who wants to push themselves for a brilliant, really important cause to Join Team EB.'
Former Celtic captain Scott added: 'I don't think that I'll be swimming the Channel but I'm definitely looking at ideas to do a challenge of my own for DEBRA this summer.
'I hope the people of Scotland will get behind us and join Team EB – kids like Isla deserve a shot at a better life with our help.'
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Isla was also impressed by the team from The Malletsheugh restaurant in Glasgow who jumped out of a plane in DEBRA T-shirts to help launch the campaign last weekend.
She said: 'Well done. That must have taken some courage. I couldn't do it! Thank you for supporting DEBRA. And thank you to the Daily Record for helping us.'
Isla admitted she is puzzled when people talk about the hardman Graeme was known as in his footballing and management careers.
She says she has only known him as her friend who hates to see her in pain.
And the brave teenager has a challenge for the legendary midfield enforcer too. 'Graeme, I challenge you to say no to my Paddington Bear stare!
'I have only known him as the Graeme he is today. So to think of the footballer Graeme is weird to me.
'Thank you again to everyone – together we can fight this.
'Scottish people are the best in the world and I truly value your support and solidarity '.
If you would like to take on any sort of challenge for DEBRA with the Daily Record – walk, run, take on a swim, add daily steps, walk your dog, or anything at all – then you should visit debra.org.uk/debra-scotland/ join-team-eb.
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