I will be honest and say that living with Duchenne isn’t always a bundle of laughs. There are plenty of problems and difficulties that have a constant effect on everything you do in your life. Whether it’s falling at a young age, going off your feet into a wheelchair, getting out and about, going back and forth to hospital, or doing simple daily activities like dressing or toileting, life isn’t without its problems. It takes a long time to get up and be ready for the day, and going out takes much more planning. This is not to say that life is not fun or enjoyable, far from it. I enjoy going to the cinema or to the pub with friends and I never feel down about what I can’t do. Life doesn’t just stop with a disability, so that’s why I think that having a very positive outlook is very important.
Despite the difficulties, your disability should not limit what you can do. Yes, Duchenne is a pain in the backside but it is something which should not hold you back. For example, I am proud to be able to tell people that I have been to university and attained both an undergraduate and Masters degree in History. So many young men with Duchenne can and do achieve many things and they excel at what they do, so I would be loath to see others held back by fear or stigma. I have not always been the most confident person but most people are always helpful and understanding so there is no reason to limit yourself. It’s also important to not worry about what other people think about you.
I am certainly very fortunate to have had such a fantastic support network of friends and family throughout my life and that has enabled me to achieve a lot. Definitely try to do as much as you can and enjoy life to the full.