making muscle wasting history

I was invited to take part in a case study for the Rare Disease UK report, on my personal battle with Duchenne and act as a spokesperson to speak out on many other issues associated with the diabolical condition.

I wrote a page which had been edited in the report to fit about my personal experiences - I hope that by sharing my experiences this will help the researchers and scientists understand the struggles we face on a daily basis, I also explained that we are often left in the dark on trials that are currently happening and we would like to keep updated on what has been found and where our money is being spent.

I discussed the lack of multi-disciplined team of specialists in each region and the worrying change from children’s services to adulthood, the standard of care needs improving to enable us to live at ease and experience life.

We all know it’s a face against time, for some our struggles differ from one another however we seem to undergo the same course of action with fear of our own demise and we have to fight to survive which brings me to a quote made by Albert Einstein the most influential and iconic scientist “The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing”

A copy of the report is available at: www.raredisease.org.uk/documents/RDUK-Family-Report.pdf

~Carl Tilson