A 10 year diagnosis...

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It's a strange disease DMD, in many ways more than just the awfulness of the condition. Diagnosis in the vast majority of cases is received by the parents, leading to the precarious situation of the affected individual being totally oblivious to what's occurring. (Not that telling a young child they are dying at a quicker rate is advisable!) It leads to a drip feed situation of a gradual diagnosis over many years. About 10 years in my case. So a snap diagnosis for the parents and a multi year diagnosis for the affected person. Whether this is right or not is entirely up to the parents and the situation at the time. For me it worked well. Such a shame though that our playful 'normalness' has to end. Then again who wants to be normal!

Extract;
...My parents were offered a seat whilst my sisters and I played with the toys oblivious to the gravity of the situation. It was explained to my parents that my biopsy result came back positive for a disease called Duchenne......
...After hearing the average life expectancy of twelve years [1986] they were in immense shock. How could their son, who was happily playing with plastic cars, possibly die at such a young age?....

To read when I fully knew about the ugliness of DMD and live past twelve then read my book DMD Life art & me 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.