Duchenne or Duchenne's

Available in EBOOK and PAPERBACK versions

A nurse told me once to say Duchenne's instead of Duchenne, at first it felt strange to be told how to say my own disease but she had a point. Saying Duchenne Muscular Dystrophy is fine but many of us including me reduce it to Duchenne. Some people say 'Let's eradicate Duchenne' or words to that extent. In France there are many families with the surname Duchenne. They may feel a little perturbed at being eradicated. It's probably better to say Duchenne's because then it better describes the disease and not a person. That disease truly will be eradicated!!!!!

A side note, Duchenne's is pronounced Do-shen's :)

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....

Read more about Duchenne's and what that diagnosis really means in my book DMD LIFE ART & ME!

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857

All links available in my website here; http://duchennemen.net16.net/Buy-my-books/


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.

A tribute

We've lost a few brave people with DMD over the last week. It is heartbreaking when anyone with DMD dies but some weeks it's extra hard when more than one go.

Here's a tribute from my book;

This is a tribute to all my fallen comrades
They were not slain by weapons
Nor war wounds but still heroes to the end
Taken by the dark claw of this deadly muscle disease
They were strong to the fore
Strength to their core while all around muscles receded
They were workers, businessmen, artists and friends
An inner power of towering energy known no bounds
Great public orators letting all know their struggle to be equal
To be equal in standards of care, equal in love
Equal in society in a world not geared for them
From innocent childhood to paralysing adulthood
Misery not their style, happiness and warmth their comforter
No pity for them please
Just remember them
The brave forgotten few
Our brothers, our sons, our fathers, our friends.
Taken before their time

(Girls can be affected, this was just for the guys at the time)

There are more comforting words and great hope in my book DMD LIFE ART & ME.
This isn't all about selling books I mean every word, we're in this together.

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1


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.

DUCHENNE AWARENESS DAY today!

DUCHENNE AWARENESS DAY today!

I've had DMD for just shy of 28 years as you know my book covers the first 25 years. So what exactly is DMD?

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. Firstly it attacks the skeletal muscles, especially the legs, hips, arms and spine. It quickly moves on to abdominal muscles, meaning boys [and rarely girls] are usually in a wheelchair between the ages of seven to ten. Finally it attacks the heart and respiratory muscles. Eventually leading to an early death [more than likely] due to cardiac or respiratory arrest...

It's a devastating disease that has robbed many parents of their children. I have lost friends to this awful condition. What gets me through is faith, not any faith but the faith that comes from a higher power. I believe a better future IS coming sooner than anyone could imagine. In the meantime any help you can provide to those with DMD is really appreciated. 50% of my amazon proceeds goes to Action Duchenne a DMD charity. My book is available at Action Duchenne's webshop where 100% of the proceeds goes to them. Thank you!

Action Duchenne webshop; http://www.actionduchenne.org/result/AD_ShopProduct/24455.jsp?n=55

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1


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.

Remembering

FREE EBOOK offer still on!!! Just 6 days to go now!!!

My friend Carl mentioned he was remembering those with DMD who have died. I thought I would also remember some of my friends who's lives were cut short by this cruel disease. I would just like to take this chance to mention John, Stuart and Sam, I miss these guys and I still find it strange that they aren't here.

My book is dedicated to Sam Morgan, he was a great positive man even though he was really struggling with this condition.

Extract;
...This book is dedicated to my dear friend ... Sam Morgan. He was sadly and cruelly taken in ... 2010 by the deadly claw of this muscle disease. Your kind, loving
and brave soul will be fondly remembered ever more....

So this one is to remember not just my friends but all those who sadly died. All our thoughts go out to the family members who remain. I believe one day we'll all be seeing each other again one way or another. Keep on hoping for the best!

Please visit here to buy my paperback version; http://duchennemen.net16.net/Buy-my-book-s/

Don't forget my FREE e-book offer!!!!! For one month only until the 28th of May my e-book version of DMD LIFE ART & ME is FREE, you can get your FREE version here; https://www.smashwords.com/books/view/69702

Only 6 days left!!!!!

FREE ebook offer extended by two days!

FREE EBOOK offer EXTENDED by 2 days so it's still 8 days to go!!!!!

Thanks to everyone who has been downloading my book I very much appreciate it!!! Spreading awareness of this devastating disease is one of my aims for this book because it is so generally unheard of.

Extract; ...In case you’re wondering what causes Duchenne Muscular dystrophy, I will explain it in terms of how it affects me. There is a protein called Dystrophin located in
everyone’s DNA, that is missing or damaged in an affected male, it affects mainly males [occasionally females] because it’s an X linked recessive error; males only have one X chromosome. This causes the muscle fibre membranes (Dystrophin acts as a shock absorber) to get over-stressed and die off...

Read why this lack of dystrophin is important in my book DMD LIFE ART & ME!

Don't forget my FREE e-book offer!!!!! For one month only until the 26th of May my e-book version of DMD LIFE ART & ME is FREE, you can get your FREE version here; https://www.smashwords.com/books/view/69702

Only 8 days left!!!!!

If you still prefer the look and feel of a real book then please visit here to buy my paperback version; http://duchennemen.net16.net/Buy-my-book-s/

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.

Looking for school

In the United Kingdom, choosing a secondary or high school is a daunting task. For those with any disease including DMD it can be a nightmare of accessibility, suitability, care needs and the right curriculum.

My primary school was a feeder school to a local secondary. Sadly it all fell through for me as the building wasn't suitable. In their infinite wisdom (tongue firmy in cheek) the primary school made me sit through the introduction process to the secondary school. It consisted of telling us all how fantastic this school was even though I couldn't go! So...

Extract;
...It felt like a cop-out at the time. All of this meant I had to look elsewhere, which was very daunting for me...

I eventually found a secondary school that was suitable but it meant sacrificing my friends. Read through my secondary school selection process and see where I ended up my book DMD LIFE ART & ME.

Please visit here to buy my paperback version; http://duchennemen.net16.net/Buy-my-book-s/

Don't forget my free e-book offer!!!!! For one month only until the 26th of May my e-book version of DMD LIFE ART & ME is free, you can get your FREE version here; https://www.smashwords.com/books/view/69702

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.

DMD life art & me Ebook now FREE

Great news! For one month only my EBOOK of DMD LIFE ART & ME is FREE! That's right it's absolutely free!! It won't cost YOU a penny! All you need to do is visit smashwords.com and buy the version that suits your device!

If you know someone who might be interested in learning about DMD, then point  them in the direction of this fantastic offer!! It will cost them NOTHING to learn about the devastating effects of this disease and to find out how someone lives with it positively.

Please visit here to receive your FREE ebook; https://www.smashwords.com/books/view/69702

(Offer lasts until the 26th of May, then a price of $3.00 will apply)

As ever if you are a fan of the traditional book, then you can buy my paperback version for the very reasonable price of £9.99 ($18.99) here; http://duchennemen.net16.net/Buy-my-book-s/


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.