Muscular dystrophy and related conditions cause muscles to waste and weaken. More than 70,000 people in the UK are affected

A remarkable Mancunian

Carl TilsonBeing diagnosed with Duchenne muscular dystrophy at the age of five has not stopped one Mancunian from achieving some astounding things. Despite what he describes as "having lived through all the struggles associated with the condition", he has been part of a full-length documentary film, raised an incredible amount of money to fund research, campaigned locally and nationally, and was selected to carry the Olympic Torch for the London 2012 Olympics and Paralympics.

Carl was diagnosed with Duchenne muscular dystrophy when he was five years old after experiencing problems falling over and being unable to keep up with the other children.  A muscle biopsy at the Manchester Children's hospital confirmed the diagnosis. He started using a wheelchair at the age of eight, when his condition had progressed and his legs were getting more fatigued. 

"It's quite difficult living with Duchenne muscular dystrophy - mentally more than physically. You have to be mentally strong. I have my off days like everybody else, like depression and anxiety, however my determination has pulled me through every obstacle."  

He says that he uses music to help cope with the challenges of Duchenne muscular dystrophy and believes that "positivity and determination play a huge part in coping with this condition".

Carl, who campaigns as a member of the Trailblazers network, has done many great things but there is one achievement which he is particularly proud of. As a huge Manchester City fan, he was involved in organising a charity luncheon at Manchester City Football Club on his 22nd birthday in 2009 where he raised over £30,000. The following year Carl received the Mancunian of the Year 2010 award after fundraising over £100,000 for research into Duchenne muscular dystrophy.

"I have always been a highly motivated person that's just my make up in life and I'm quite a determined person. Having been told I have Duchenne muscular dystrophy and having lived through all the struggles associated with the condition it's fair to say that's what motivated me to take part in campaigning and fundraising work."


It is this determination that prompted Jon Hastie to include him in his film, A Life Worth Living: Pushing the Limits of Duchenne, which documents what Jon describes as ‘people living remarkable lives, and the challenges those with Duchenne must face and overcome’. 

Carl has since been selected as an Olympic torchbearer for the London 2012 Olympics and Paralympics. Carl, who described being selected to carry the Olympic flame as ‘incredible’, was nominated for his involvement in fundraising and campaigning, and all that he has done to raise awareness about Duchenne muscular dystrophy. He hopes this will be an opportunity to make Duchenne muscular dystrophy more widely known.

"There are no words to describe how amazing it felt! Even being nominated was an honour in itself. It feels like I'm being rewarded for all the things I've done in fundraising and raising awareness."

The Muscular Dystrophy Campaign has been supporting families affected by Duchenne muscular dystrophy since 1959 funding research to find a treatment for this devastating life-limiting condition. The Muscular Dystrophy Campaign has invested more than one million pounds into the development of exon skipping therapies over the past 20 years leading to encouraging results. With your help we can continue to fund research which might produce a treatment within the decade.



Tags: Articles of interest, Duchenne muscular dystrophy, Lifestyle

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