making muscle wasting history

I was invited to make a short speech about living with Duchenne Muscular Dystrophy in addition providing my experiences from the care I have receive being a child all the way to adulthood.

Suggesting how we could improve the current guidelines that has been placed some years ago when Duchenne Muscular Dystrophy was the then forbidden conditioning that nobody would wash their hair with so to speak.

Living in silence, just accepting the system as it stands now may not concern an individual with no known medical condition.

As a 23 year old living with Duchenne I find it quite unacceptable to have poor guidelines after you make the huge step into the confused scenario with nobody to turn to for advice, You are made to change from children services into adult services at 16 years old.

Immediately you become classed as bigoted patients, you find out your now left with no direction, left to your own devices with no specialist support for adults with Duchenne, example they don't continue checking your heart and breathing function pending upon request.

The talk I made was emotional with a hint of humour, still I kept to the point. Prior to my visit to London I had created a video to help embolden my message which again consisted with emotional scenes mixed with humour. I got a warm reception from the people in attendance where advocates declared me an inspiration.