Jubilee and Memorial...

Today marks the anniversary of our Queen (Elizabeth II), her father the King (George VI) died in 1952 and after flying in from a foreign visit she was later coronated Queen in June of that year. Six decades is an amazing achievement. :)

I thought it would be appropriate to remember how DMD got its name. Over 150 years ago a scientist in France called Guillame Armand Duchenne noticed that young boys were dying of a mysterious disease and noticed the characteristic elongated calves generally apparent in the young boys (sometimes girls are born with DMD) he studied. He called this elongation 'psuedohypertrophy' which indicated the 'false enlargement' of the muscle. It was enlarged because muscle was actually dying but not due to any increased growth. It took until 1982 to locate the gene at fault for this, which of course was dystrophin. Many potential treatments are being investigated now but as of yet a cure remains elusive.

To read how Duchenne's affects a living breathing person then please read my book DMD Life art and me and buy here; http://duchennemen.net16.net/buymybook.html

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...



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.