The 30%....

A very little known DMD fact is that approximately 30% of those diagnosed do have some developmental problems. The protein Dystrophin (the missing protein causing DMD) is usually present in the brain to a certain extent, but because of DMD it is absent. No one is entirely sure why most with DMD are fine developmentally and a few aren't as we both lack dystrophin. It could be a hidden compensatory mechanism (that's my speculation). Personally I have no apparent problems.

Extract; ...to send me to a ‘special’ school, but my father flatly refused that idea. I did not appear to have any developmental problems. Also (I’m grateful to say) he
wanted me to learn geography, history, maths and all the other subjects so called ‘normal’ children take. Not learn to “tie my laces”, even though I would have been too weak to do that later in life. I was going to be ‘different’ enough without going to a
special school....

I appear to be disparaging about special schools but in the 80's they were all about life skills that would not help me. With no mind problems, I could definitely keep up. These days many special schools teach subjects and work on specific development areas and may indeed be useful for those with DMD.

Read my book to see how my education went and buy my book 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.