The scourge of scoliosis...

As the spinal muscles start to weaken it can invariably lead to scoliosis or a curvature of the spine. A twisted spine is a complex condition in itself but for those with DMD it can be the most daunting challenge. The time for surgery has a very narrow window and the decision to operate or not may be needed within a few weeks as breathing and heart issues can affect the operation. So some go through with it and a few miss out or choose not to do it. Originally I didn't want it but my parents and I were talking it through and I was coming round to doing it. Unusually the spinal team monitoring me said I didn't need it and that monitoring was stopping and that my wheelchair back pads would keep my back safe. This was a huge mistake and I was let down badly, as my back is far worse causing pain and it accelerated my breathing and heart issues and prevented me easily having a feeding tube. Proper monitoring is a must, I cannot emphasis that enough.

Extract;
...my curvature was [apparently] below a certain threshold level and I wouldn’t be needing surgery. Also he mentioned that my wheelchair support wedges would be enough to keep things in check. I was to be discharged from the clinic with immediate
effect. At the time I was very relieved not to keep having more uncomfortable X-ray sessions and to be avoiding surgery. However I did not know the precise muscle wasting I would have to endure in the future, we trusted the registrar and consultant. In recent years my spine is much worse...

To see how a futher lack of monitoring nearly killed me then please read and buy my book DMD Life art & me; 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.