Updated on Sep 2, 2020. Posted on Oct 27, 2016

    13 Things You Need To Know About Muscular Dystrophy

    Some illnesses are more visible than others.

    1. The term muscular dystrophy covers a wide range of conditions.

    Twitter: @rominapuma

    It's kind of an umbrella term, says physiotherapist Sunitha Narayan, clinical coordinator in neuromuscular conditions at University Hospital Southampton.

    "Muscular dystrophy is the term used for a group of inherited genetic conditions that gradually cause weakness of muscles," Narayan says. "This eventually leads to a loss of functional abilities like walking, dressing, feeding, etc, and in some conditions can lead to death."

    There are branches of muscular dystrophy that only affect certain people, such as Duchenne muscular dystrophy, which mainly affects young boys.

    We spoke to people living with different types of muscular dystrophy to find out more about their lives.

    2. The main symptoms are all similar.

    3. But everyone faces different challenges.

    David Gale

    "Unlike a lot of other people with Becker muscular dystrophy, at my age [32] I am still able to walk unaided. But I do face a lot of the common obstacles many disabled people face, such as using stairs, climbing steep gradients, being quite clumsy, and tiring quickly. I also walk with a slight limp and curvature of the spine (scoliosis). It can also cause pain in my lower back, hips, and pelvis due to it making these areas tight and constricted.

    "But on the whole I manage a lot of things pretty well. It's mainly picking things up off the ground I can have difficulty with if it's not at waist height. It's particularly difficult having a baby boy and not always being able to lift or carry him. Also as a side effect of the condition I have slight cardiomyopathy, which is common with men who have my condition. I have to take beta blockers as a precaution, which always gets looks of bemusement off chemists when I go to collect them as it's medication you don't necessarily associate with someone my age." – David Gale, 32

    4. There is no such thing as a typical day.

    Karis Williamson

    "My day-to-day routine varies widely but my illness [Karis has congenital muscular dystrophy] is progressive and although I used to be able to eat and drink, sit up, and speak quite loudly, my muscles have weakened and I am unable to do all of these things. I have never been able to walk or stand. I'm still able to speak but I need a microphone as my speech is muffled by the ventilator mask, which I have to wear full-time now.

    "I need assistance with all aspects of personal care, medicines, etc and I use a powered wheelchair. I also need a portable ventilator to help me breathe and I have nutrition through a gastrostomy tube as I can't eat any more. I need frequent suction for secretions and it takes me about two hours to get showered and dressed, I then have to use a machine to help me cough, after which I'm usually working on my OU work or English, maths, or French, interspersed with breaks for resting or going outside into my garden or down town shopping or for coffee. I go to a digital animation class every Friday from 4-6pm with a friend who acts as my hands for me.

    "I really like going to the cinema, and theatre, and I even got to Glasgow to see and meet Macklemore and Ryan Lewis, courtesy of Starlight. As you can see, it can be a life of extremes! I love travelling and we try to get to the south of France every year, but we have to drive all the way as I'm unable to fly because of the air pressures and I would need a cargo plane to take all the equipment I need with me!" – Karis Williamson

    5. Most people are just trying to live a normal life.

    Hayley Lloyd

    "Tommy was diagnosed with muscular dystrophy when he was 6, although we had to wait 18 painstaking months for his type to be confirmed. It was so rare, that's why it took so long [Tommy has limb girdle muscular dystrophy].

    "From Tommy's point of view, he would say that 'I get much more tired than everyone else', that 'my legs and arms hurt', and for everyone to understand why he can't keep up. Tommy can still walk, so it's not obvious he has a disability.

    "He waddles when he walks but children just think he is slow and not capable. A typical day includes school as normal. Tommy may need to take more breaks if he has PE. Depending on how tired he is after school, he may need additional rest. I will always ask him how his legs are. We have a scale of 1-10. If he's 5 or above I know he needs rest. Tommy can't go to sports after-school clubs as he can't manage this. He does love his youth club though. Apart from that he is just like any other 11-year-old, playing games and doing homework." – Hayley Lloyd

    6. Genetic history has a large part to play.

    Claire O’Hanlon / Muscular Dystrophy UK

    Though muscular dystrophy is a genetic condition, it's not as simple as testing for a gene.

    Narayan says: "Sometimes all you need is one faulty gene with a mutation from one parent and you could have the condition. Sometimes you need two faulty genes with mutations from both parents to manifest the condition. At other times you might have a new mutation no one else in the family has that could cause the condition.

    "If there is a family history, and if it is likely that other members of the family could be affected, then most genetic services will offer genetic counselling to those who might be carriers or at risk."

    "I was about 5 months old when I was diagnosed but it was devastating for my family. My mum had been screened for muscular dystrophy and the results said I wouldn't be born with muscular dystrophy, but obviously they were wrong. My brother had died of the same illness just before I was born and so it was the worst possible news and the process was horrific." – Karis Williamson

    7. Some forms of muscular dystrophy are less visible than others.

    8. And people can be ignorant.

    9. Day-to-day life involves lots of planning.

    10. Parents have to navigate an ever-changing condition.

    11. And it can be lonely for parents and patients both.

    Hayley Lloyd

    "Tommy is currently still ambulant. We're lucky, but we're not sure how long this will last. He has a wheelchair for bad days, when he's exhausted and his legs are hurting. Tommy struggles to get upstairs now too.

    "Tommy wants to carry on as normal, he wants to be like his friends at school, but he's slower and can't keep up. This upsets him. I know he feels isolated sometimes, and he'll say to me: 'There's only two people in the UK with my type of muscular dystrophy. Nobody understands how I feel. You don't know what it's like to have MD.' This is very difficult for me. I'm a single mum and I have to cope with this on my own." – Hayley Lloyd

    12. The illness has a mental impact as well as a physical one.

    13. And a positive mental attitude is invaluable.

    David Gale

    "I think the main misconception in my opinion is that it's seen as a death sentence. I don't really see it that way, and I have met many other people with muscular dystrophy who live life to the full, no matter what obstacles each variation of the condition may cause." – David Gale

    "Sometimes society is more of a disability than having muscular dystrophy itself! When you have a life-limiting illness, every minute is precious, so I don't want to waste it negotiating obstacles either physically or metaphorically." – Karis Williamson

    Thanks to Muscular Dystrophy UK for its help with this article.

    If you would like information or support on muscle-wasting conditions, please call the Muscular Dystrophy UK information and support team on the free helpline:
    0800 652 6352 or email at: info@musculardystrophyuk.org.

    Ailbhe Malone is the campaigns editor for BuzzFeed and is based in London.

    Contact Ailbhe Malone at ailbhe.malone@buzzfeed.com.

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