On Friday 28 March I attended the Duchenne UK New Horizons National Conference at the Holiday Inn in Bloomsbury, London.
This conference brought together hundreds of people connected with the muscle wasting condition Duchenne Muscular Dystrophy (DMD), including people like me who have DMD, lots of parents and carers, doctors and health professionals, and representatives from pharmaceutical companies.
I was part of a presentation about Psycho-social Needs and Education along with another adult with DMD, Benjamin. Presenting with us were Janet Hoskin, an associate professor at the University of East London and member of the RIX team, and Rory Conn who is a psychiatrist. Rory spoke about the need for psycho-social support for people with DMD, and Janet shared how her research shows that schools often ignore the non-physical aspects of DMD such as neuro-divergence and anxiety even though these are established risks.
Benjamin and I spoke about our time in school, college and university. Benjamin did A levels and went to Nottingham University where he was awarded a first class honours degree in Neuroscience, which is amazing. He also talked about the support for reading that he received in school when he was little and how this ensured he didn’t get left behind. Like other people with DMD, I also have dyslexia, ADHD and borderline Autism Spectrum Condition. In school this meant it was often difficult for me to learn and make new friends. When I was younger, school gave me extra reading support with a teaching assistant, and extra Maths support.
I managed to pass all my GCSEs and then did a BTEC in IT and Software Development at college. I studied Games Design and Development at University because I enjoy making video games and playing them. University was fun and I made lots of friends and learned lots about game development. Overall the best thing about University was making friends and drinking shots before lessons!
Saul Catlin, DMD Advocate and RIX co-researcher