The suspicious disease...

In the beginning a child with DMD appears to be 'normal' and this causes no end of suspicion in other people. Say if a child with DMD needs to use a wheelchair only now and again then people can think something is amiss even when DMD is secretly stealing muscle. Or worst still people think you're not even unwell!

Extract;
...My illness is met with suspicion and a total lack of knowledge or worse still they think you’re “putting it on”...

There is a way to gently put this right and that's by education which is partly what my book is about.

Extract;
...It’s important for people not to judge when or if they know a child has a DMD, the best thing you can do in my opinion is to say you’re sorry to hear of the devasting news. Also ask is there anything you can do to help. Please try not to ask questions that you wouldn’t ask of any other terminally or seriously ill patient....

To find more insights and educate yourself about DMD then please visit and Buy 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.