Eilean Stewart

Eilean Stewart, Glasgow

Limb girdle muscular dystrophy

Eilean was diagnosed with limb girdle muscular dystrophy type 2i when she was 12.

“I’d never been good at sports and was always picked last in PE class. In my last year of primary school, I tore my calf muscle and had to sit out of PE for six weeks. During that time I became weaker and struggled to do normal daily tasks, such as standing up after sitting on the floor.

“I started attending a hospital clinic and although muscular dystrophy was mentioned as a possibility, doctors believed I had polymyositis. I was put on steroids to reduce the inflammation and increase my muscle strength.

“After a year on the medication, my strength hadn’t improved. I was sent for a muscle biopsy and was diagnosed with muscular dystrophy. Genetic testing at the Centre for Life in Newcastle confirmed a diagnosis of limb girdle muscular dystrophy, type 2i.

“At the time it was a crushing blow. We knew there was no cure. It brought my mum, my big brother and me closer together – the support from family, friends and neighbours helped pull me through,” Eilean said.

Eilean’s mum joined online support groups and came across Muscular Dystrophy UK that way. Eilean didn’t want muscular dystrophy to be any more a part of her life than it absolutely had to be.

“A few years ago, a friend with a muscle-wasting condition told me how long it took her to get access to services such as housing, social work and occupational therapy. She advised me to get on these waiting lists as soon as possible.

“I chose not to listen to her because I didn’t want to believe things could get harder than they were. They did.”

Eilean has since learnt the importance of being prepared. She’s also learnt that her stubbornness made life much harder for her than it needed to be.

“I am a firm believer that you are only disabled by your surroundings. So I’d encourage someone newly-diagnosed with a muscle-wasting condition to be proactive. Plan a few years ahead. If you make your surroundings barrier-free, life will be so much easier in the long run.

“Also, remember that you have muscular dystrophy and not the other way around. Don’t let it stop you from doing anything you want to do,” Eilean said.

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