I've had DMD for just shy of 28 years as you know my book covers the first 25 years. So what exactly is DMD?
Extract;
...Duchenne Muscular Dystrophy is a rare (approx. 1 in 3500 births in the UK) severe terminal muscle wasting genetic disease that gradually kills all the body’s muscle cells. Firstly it attacks the skeletal muscles, especially the legs, hips, arms and spine. It quickly moves on to abdominal muscles, meaning boys [and rarely girls] are usually in a wheelchair between the ages of seven to ten. Finally it attacks the heart and respiratory muscles. Eventually leading to an early death [more than likely] due to cardiac or respiratory arrest...
It's a devastating disease that has robbed many parents of their children. I have lost friends to this awful condition. What gets me through is faith, not any faith but the faith that comes from a higher power. I believe a better future IS coming sooner than anyone could imagine. In the meantime any help you can provide to those with DMD is really appreciated. 50% of my amazon proceeds goes to Action Duchenne a DMD charity. My book is available at Action Duchenne's webshop where 100% of the proceeds goes to them. Thank you!
Action Duchenne webshop; http://www.actionduchenne.org/result/AD_ShopProduct/24455.jsp?n=55
Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1
Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1
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.
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