Zoe Harrison had no symptoms until she turned four
A woman who lives with a rare condition said she was “completely fine” until she hit a certain age. Zoe Harrison, from Southport, has Limb Girdle Muscular Dystrophy 1B – a genetic disorder that causes muscle weakness and wasting, usually starting in the hips, thighs, and shoulders.
The 26-year-old, who now lives in Huyton, said there were no symptoms of her condition prior to her fourth birthday. However, after this date, the former Edge Hill University student said her parents took her to the doctor because they noticed something wrong when she walked.
The youth support worker told the ECHO: “There were no indications that anything was wrong at all before this. But when I was four, I slowly started to go on my tip-toes when walking. The GP said I might’ve just been a toe walker and to leave it for a few years.
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“I went back when I was seven for an unrelated cyst on my brain. When they were doing a full-body scan and a muscle biopsy, they realised I had the condition.”
Zoe explained how the condition affects her whole body – especially her arms and legs. She described how she gets aches and nerve pains daily that feel “sharp and electrical”.
The psychology graduate said: “Every morning I wake up, I have to take painkillers and muscle relaxers. I can walk just about the house, but it is awfully difficult. It is a lot of effort and very painful for me. I have an adapted walk because I struggle with balance and get quite dizzy. I always get a lot of spasms in my stomach and my bladder.”
Wanting to raise awareness about her condition, Zoe has created a podcast Dystrophy Diaries. Available to listen to on Spotify and YouTube, the most recent episode featured TV host Gabby Logan.
Zoe said: “Unfortunately, neuromuscular conditions are not given the investment they desperately need for treatments, equipment and general support. It is my hope by getting this condition out there then hopefully that can change.
“I feel this is my purpose in my life. It’s been a difficult journey. I spent 12 years at Alder Hey, pretty much as a permanent patient. I would come home for six weeks and then end up back in there for six months at a time. I missed out on a lot of life, but I feel like everything happens for a reason, and I believe this is my chance to raise awareness of the condition.
“I also want to help other people living with neuromuscular conditions know that they are not alone and that they can achieve anything they set their minds to.
“Life has been far from easy for me, but I was able to go to university, live independently, get a job, and even get married in a few months. Muscular dystrophy does not have to ruin your life; you just need to find your own way of doing things.”
