The unexpected things

I remember writing about receiving my first webcam in my book. After seeing everyone I knew getting cam's and seeing that youtube was just starting to expand exponentially I decided to get one!

My first video specifically dealing with DMD started off pretty low but has now over 50,000 views, modest by youtube standards but for DMD and myself that's amazing awareness. It has loads of comments and is getting out there, I could never have imagined that;

Extract;
...To date and for me the most unexpected comments I get are from medical students; I’ve talked to trainee physiotherapists, genetics students and nursing graduates amongst others. I never once thought I would attract the medical world because I wasn’t sure my knowledge was that good. I suppose I gave an account that both describes the condition like a textbook and crucially gives the visible human side of things...

Read more in my book DMD LIFE ART & ME, available in ebook and paperback versions 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.