about duchenne muscular dystrophy

"Duchenne Muscular Dystrophy affects my whole life as I can’t go out with my friends and play sports such as football... I have to have 24/7 care and deal with the mental strain of the illness every day, with a death sentence above my head, never knowing when my time is up!

I can’t eat food properly anymore as my muscles in my throat have become weak so enjoying a meal for me has disappeared... I have to be fed through a tube into my stomach for nutrition because eating by mouth is dangerous and hazard to my health as there’s no guarantee that it will go down safely, it could end up going into my lungs.

I have had a number of operations throughout my life from my tendons, spinal surgery and my gastrostomy... I have problems with my poise as I can easily lose control of my balance... I also have problems with my waterworks meaning I need to go to the toilet more than an average person so I have to wear a discreet leg bag for convenience.

I struggle to move my arms up..."

Carl "Action" Tilson, 22

Hello my name is Paul Fitzpatrick Chair of Action Duchenne. The only UK charity exclusively fighting for a cure for Duchenne.

Duchenne Muscular Dystrophy is a devastating muscle wasting disease that leads to paralysis and early death. Imagine being told that your beautiful little child will be in a wheelchair by the time he is ten, then slowly loosing the use of all his muscles, imagine being told that by the time he reaches his late teens or early twenties he will probably be dead. This is the sudden heartbreaking news we received nine years ago.

If you are also a parent who has just been given the news your child has Duchenne then I know exactly what you are feeling , the trawling of the Internet and books, looking for people who will listen, trying to find any information to help you, but most of all looking for Hope!

Action Duchenne gave us hope and will do the same for you. Trials are now becoming an exciting reality, an active treatment or cure is within our reach. I firmly believe that Action Duchenne can assist in both information and Hope. We are the only exclusive Duchenne charity in UK.

For more information visit the Action Duchenne web site at http://www.actionduchenne.org

Dean Widd - Regional Advocate | Tel: 01786 812 080 | Mobile: 07780 955 695| dean@actionduchenne.org