As one of the few people to reach their 50th Birthday with Duchenne Muscular Dystrophy, I thought I should probably write something.
This isn’t intended to be profound or inspirational, I’m not special. I’m just someone who has managed to beat the odds.
Many of my peers haven’t reached my age, and everytime I hear of someone with Duchenne dying it hurts. Our life expectancy may have increased, but so many are still not reaching their twenties, or even their teens!
There has been progress in the treatment of Duchenne over the years. There is still no cure in sight though, it’s always just around the corner, beyond our grasp. For many of us a cure won’t help much, our lung and heart muscles are too far gone. I think we all still hope for something that will stabilise us, but don’t really believe it will happen.
Like I said treatment has improved, I was never expected to reach 20. Over the years I have often been reminded of this in some ofhanded manner. For example a dentist saying “there’s not much point treating your teeth”, with the unspoken words “it would just be wasting NHS money”. One consultant a few years ago was even more blunt, saying “you’ll be dead by next year”. It doesn’t hurt as much anymore, I have learned that nobody really knows. Doctors and other medical professionals aren’t Gods, even if some that I’ve met seem to think they are.
I do not want to put down the NHS, or the many good people who work there. I wouldn’t be alive if it weren’t for some of them.
My scolliosis surgeon in the 90’s who straightened my spine. Stopping my body from contorting and reducing my respiratory function. My respiratory consultant, who on meeting me immediately put me on a ventilator. The carbon dioxide in my lungs was so high it was poisoning my body. The gastric surgeon who refused to operate on me and tried everything he could to give my body chance to heal, despite the odds, and advice of others.
Then there’s the carers who have saved me by simply reconnecting a hose on my ventilator. Turned my ventilator off and on when it stopped working. Leaped across furniture to grab my backup ventilator. Held a broken mask on my face so I could carry on breathing and more.
While I’m thanking people I do also need to mention my Mum. We have our differences, but she has saved me many times. When Gloucestershire’s NHS had given up on me, she begged and pleaded for them to reffer me to the Royal Brompton Hospital in London, that is when I got my ventilator. She has quickly reconnected my ventilator when medics have accidentally pulled out hoses. She has screamed at nurses, forcing them to pay attention, when I was laying in a bed with my airways closing due to an allergic reaction. Every day she is here making sure I’m safe from potential injuries caused by inexperienced people.
As you can probably tell living with Duchenne isn’t easy. We have to be alert to dangers every day, educate ourselves and choose people to be around us that we know we can trust.
But we can have a good quality of life, enjoy things, work, have hobbies and give our own time helping others. We are humans, with the same feelings and emotions as everyone else. We want to live and to experience everything we can.
There still needs to be more education around Duchenne, better standards of care and more empathy from the services that are supposed to help us. But many of us are living longer and that’s a good thing, Today I reached 50!
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