Some illnesses are more visible than others.
The term muscular dystrophy covers a wide range of conditions.
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.”
We spoke to people living with different types of muscular dystrophy to find out more about their lives.
The main symptoms are all similar.
There are branches of muscular dystrophy that only affect certain people, such as Duchenne muscular dystrophy, which mainly affects young boys, Narayan says. “The main symptoms that people recognise is weakness of muscles. This is generally described as difficulty in carrying out day-to-day activities like running, climbing stairs, and walking uphill, as well as repeated unexplained falls, difficulty opening jars, difficulty lifting arms overhead, and difficulty standing up from low surfaces.”
For example, the heart and lung muscles may be affected. “Depending on the muscles that are affected, a wide range of activities become difficult.”
But everyone faces different challenges.
“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
David Gale
There is no such thing as a typical day.
“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
Karis Williamson
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