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    • The girl began to walk on tiptoe and her whole life changed
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    The girl began to walk on tiptoe and her whole life changed

    Online Niel Posted on

    Zoe Harrison had no symptoms until she was four years old

    Zoe Harrison, pictured with her fiancé, has "spent his life" as a patient at Alder Hey Hospital
    Zoe Harrison, pictured with her fiance Karl, ‘had the time of her life’ as a patient at Alder Hey Hospital(Image: Zoe Harrison)

    A woman living with a rare condition has said she was “completely fine” until she reached a certain age. Zoe Harrison, from Southporthas 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 Huytonsaid there were no symptoms of her condition before 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 with her walking.

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    Youth support worker said the ECHO: “There were no indications that anything was wrong at all before this. But when I was four, I slowly started tiptoeing when I walked. The GP said it might just be a toe walker and 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 did a full body scan and a muscle biopsy, they realized I had this condition.”

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    Zoe explained how the condition affects her whole body – especially her arms and legs. She described how she has nerve aches and pains daily that feel “sharp and electric.”

    The psychology graduate said: “Every morning I wake up, I have to take painkillers and muscle relaxants. I can just walk around the house, but it’s awfully hard. It’s a lot of effort and very painful for me. I have an adaptive gait because I struggle with balance and get dizzy quite a bit. I always have a lot of stomach and bladder spasms.”

    Wanting to raise awareness of her condition, Zoe created a podcast The Dystrophy Journals. Available to listen to on Spotify and YouTube, the latest episode featured TV host Gabby Logan.

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    Zoe Harrison has a rare form of limb girdle muscular dystrophy 1B
    Zoe Harrison has a rare form of limb girdle muscular dystrophy 1B(Image: Zoe Harrison)

    Zoe said: “Unfortunately neuromuscular conditions are not being given the investment they desperately need in treatments, equipment and general support. I hope I get this condition out there, I hope it can change.

    “I feel like this is my purpose in life. It was a difficult journey. I spent 12 years at Alder Hey, almost as a permanent patient. I would go home for six weeks and then end up back there for six months at a time. I have missed out on a lot of life but I feel like everything happens for a reason and I think this is my chance to raise awareness of the condition.

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    Zoe Harrison's condition causes progressive muscle weakness
    Zoe Harrison’s condition causes progressive muscle weakness(Image: Zoe Harrison)

    “I also want to help other people living with neuromuscular conditions to know that they are not alone and that they can achieve anything they set their minds to.

    “Life was far from easy for me, but I was able to go to university, live independently, get a job and even get married within a few months. Muscular dystrophy doesn’t have to ruin your life; you just have to find it. your own way of doing things.”

    Online Niel
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