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Disability isn’t a burden, it’s a way of Life

My life as a Dad with Limb-girdle Muscular Dystrophy

Hi, I’m Ryan, a father of 6 living with LGMD. I suffer from a form of Limb-girdle Muscular Dystrophy called Dysferlinopathy. It mainly affects the girdle muscles, so my shoulders and biceps, plus my hips and quadriceps. It was when I was in my early 20s that I first noticed something was wrong. It was raining and I was with friends, so we decided to run home. But my feet felt like they were in concrete. No matter how fast I tried to run, I just wasn’t going anywhere fast?! I then contacted my GP to look further… I had a blood test which showed my CK levels to be very high, which indicates possible MD. I was referred to a specialist, who conducted a series of tests, ECG, MRI, and finally a muscle biopsy. Which confirmed a diagnosis of Dysferlinopathy. It’s affected my life a lot, but hasn’t stopped me from living my life as any normal person would. But that is something that takes a lot of mental strength to do. I’m happily married with 6 children and have been working with a diagnosis. But slowly over time, my condition is getting worse. It has been a HUGE struggle. I worked in the hotel industry in my early 20’s moving on to being a sales rep. I struggled to carry the wine to customers and walking stairs. I then took a 2-year break to gather myself, moving into volunteer work at my son's school. I loved it and went into a full-time career. It wasn’t easy as my safety became more at risk as I was falling often, unable to climb stairs, etc. I used a crutch at first, then 2, then a wheelchair when outside. I then went to a primary school to work but then had a major accident falling at work and breaking my hip. I was hospitalized and put back together and now I’m working for the NHS from home. Also, I’m getting a motorized chair, to stop any further accidents. I see a specialist once a year and rely on adult social services to help with equipment needs. It’s difficult to describe, but I’ll try: I can still walk slightly, but only on locked knees, otherwise my legs won’t hold my body weight and I’ll fall straight to the floor. My balance isn’t good at all, so I use objects/furniture around the house to keep me balanced. My arms feel like they weigh 10 times more than they should. So I can’t lift them above the waist without it feeling like I’m lifting a heavy weight. Everything I carry feels like it’s made of iron. If I was to give any advice to fellow sufferers, I would say, you are rare!! There's a 1 in 100,000 chance of getting this condition. Only the strong are given this opportunity to inspire the world. Everyone is dealt with hardship, but it’s only hardship if you allow it to be. I use my condition to inspire my children to believe anything is possible no matter how hard the may circumstances. Be you, be true, be happy, BE UNIQUE!


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I’m a father of 6 living with Muscular Dystrophy.

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Ryan Swanepoel

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Disability isn’t a burden, it’s a way of Life

Hi I’m Ryan, a father of 6 living with LGMD. I suffer from a form of Limb girdle Muscular Dystrophy called Dysferlinopathy. It mainly affect