Heart Problems

A frightening part of DMD is having heart problems. DMD actually affects the heart as it's a muscle too. We tend to get dilated cardiomyopathy. It's something to aware of as you're not often informed about it from any clinical team. It often starts with palpitations or a fast heart rate that lead to breathing problems,

Extract;
Then the palpitations got more frequent, not even the overnight use of my ventilator calmed me. In the mornings within minutes my hands would start pouring with sweat and I would sit in bed panting while my mother got me up... as I would get extremely
breathless and sweaty in my hoist. I would shout at my mother, “Get me off! Get me off! I can’t breathe, please hurry up!” I could see black spots in front of my eyes and very nearly fainted as my heart would try to hammer its way out.

It's very important if you have DMD and experience these symptoms then please get checked out. To see what I went through please buy my book DMD Life art & me here; http://duchennemen.net16.net/buymybook.html



Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.