The impact

I talk a lot about how DMD affects myself or others with Duchenne's living like I do but my book has had many unintended consequences. One such consequence was definitely helpful for my health. Every week my mum has carers in to look after me for a few hours and it's vital they don't turn up with colds or infections because I could catch it. You see in my book I go through the time I ended up in intensive care with pneumonia fighting for my life. All of that started from a fairly innocuous cold. One of the leaders of the carer company read my book and has made it more implicit to the carers that they not come to my house ill. My book has helped a few people 'get it' and grasp how dangerous DMD can be.

Extract

...In the afternoon the nurses and doctor...had their usual patient meeting about me. They were quite concerned that my oxygen saturations were not rising above eighty percent. All sorts of drastic interventions were being discussed such as the need for permanent oxygen to be used or to start me on a more invasive ventilator....

Read more 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/

My art can be viewed here; www.artwanted.com/thebigG2005


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

How do girls get DMD?

Available in EBOOK and PAPERBACK versions,

I mention quite a lot now that girls get DMD but how you might ask? Firstly you need to know how girls become carriers. The genetic problem (lack of dystrophin) occurs in the X chromosome. So if the genetic problem  happens to a boy because his genetic make up is XY he will always get DMD. A girl however becomes a carrier because one of her X chromosomes has the fault (their genetic make up is XX), but the remaining X takes over with it's code for dystrophin intact. Carriers can become severely manifesting carriers i.e. displaying some of the same characteristics of full blown DMD but have some sort of functional dystrophin.

Now the main point, (thanks to my friend Julie Gilmore for mentioning the term skewed X inactivation) how girls get DMD. I could be completely wrong about this but my limited understanding of skewed X inactivation is thus, instead of the other X chromosome taking over as per a carrier for some reason the other X does not work.  Hence the inactivation of the code for dystrophin. This may not be the only way girls get DMD but I hope this sheds some light on it. So girls in rare cases do get 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....

My book is from a man's perspective but DMD affects girls and boys similarly so to find out what we can go through please read 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.

Working wonders

Available in EBOOK and PAPERBACK versions

I am always impressed at the guys and girls who live with DMD that get jobs. Some are employed by forward thinking companies and many work for themselves. I work for myself at the moment, I've written my autobiography and my second book comes out in e-book format very shortly! I'm also an artist too.

Recently I was impressed by a 20 year old who attached a lawnmower to his wheelchair and started earning some money mowing his local neighbourhood! That is really inspiring to all with DMD!

Extract;
...In fact many people have commented ... that the painting [entitled port and ornaments] looks photo realistic even though I wasn’t aiming for that. God has blessed me with this artistic talent .... You can see all my art at artwanted.com, just type in Ian Griffiths [in the search box]....

With the right attitude and drive anyone can work even in these extremely tough economic times. One should never give up! Read through my own working wonder called 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

All links available in my website 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.

When adaptive technology fails

Available in EBOOK and PAPERBACK versions

Last night my adjustable bed would not work, so I spent the night in the exact same position, thankfully I slept with no problems. Although it is very annoying when you cannot move to get comfortable in bed. It is a good thing that I had a working air mattress or I might have begun to develop a pressure sore! When your adaptive technology works properly, you can be lulled into a false sense of security, thinking you can take on anything. That is the same for every human being but with DMD these things can quickly become life-threatening, especially if you're ventilators stop working etc!

Extract from 2006;
.....My personal problems all seemed to be leveling out around me but as I know only too well life tends to throw a spanner in the works. That spanner in this case was my old grey lift. It had been my loyal servant for a shade over a decade, but time and wear had started to take its toll...

It is all about your attitude in these times that will get you through and in my case a strong a reliance on faith. If you have a positive outlook and hope then you can overcome quite a lot. Hopefully you can see within my book how that positivity comes through especially when times get tough.

Find out more 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


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.

Not joining the dots

Available in EBOOK and PAPERBACK versions!

When I was around twelve to fourteen I started researching DMD on the internet. I looked at terms like heart complications and breathing problems. I went through the list thinking I've got that and that but not this, this and this. I presumed in my naivéty that 'Oh I'd never get those symptoms'. I just couldn't equate that to me!

Extract;
...To me I thought I would go on and on staying the same; not equating what I had learnt about my DMD to me possibly getting worse...

As I got older the reality quickly set in and all the list had said I developed. Follow me on my travels through Duchenne's in my book DMD LIFE ART & ME!

Available as a PAPERBACK 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

Get you very reasonably priced EBOOK 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.

JUST 3 days left.

FREE EBOOK offer coming to an end soon!!! JUST 3 days now!!!!

I won't be back till there's just one day left in this ebook offer! So you really haven't got long left until this offer ends. I've had a great response with over 50 downloads so far, you can certainly increase that and it's totally FREE. Let your friends know, if they have never heard of DMD they can find out for FREE. There's no better time than now!

Extract;
...When I was about 18 months old my mother noticed I wasn’t moving around like I should have been, my sisters could run rings around me. I was often bumping into things and holding on to furniture whilst walking. My mother was obviously concerned, so she contacted the health visitor and our family doctor...

Read more about the genetics of the disease and how I've coped with Duchenne's in 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 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 3 days left!!!!!


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.