It was hard to feel accepted growing up with Bethlem myopathy in Scotland. I didn’t know anybody with a muscle wasting condition in my local area, which often left me feeling isolated. Coming to terms with my diagnosis was hard as I didn’t have a community around me who understood, and I felt very different to able-bodied people.
I set up the Young People’s Support Group so other people in the same position could have a support network to lean on. The group provides a safe place where we can come together to share our experience with people who understand what it’s like.
I’ve experienced first-hand how hard it is to receive support from schools in Scotland. I think the biggest barriers to inclusive schooling are a lack of communication, a lack of funding and a lack of staff. The progress is slow and a lot could be done to make life easier for young people with muscular dystrophy.
The support group allows us to support each other, share advice on important things, and learn from each other. It’s an inclusive space where we can accept each other and ourselves, as we all have a shared experience.
We’ve had two meetings so far and they’ve both been great. We had a speaker with muscular dystrophy who talked about her experience and education path, and I hope to expand on this by having more meetings with speakers and sessions on how to access different things such as hiring a carer.
The feedback has been really positive so far and I hope more support groups are set up so young people with muscular dystrophy can make friends, get information and push for societal change.
MDUK has been really supportive while I’ve been setting up the group, and made the process simple. It put me in touch with other people who have muscle wasting conditions who now come along to the group. It wouldn’t have been possible without MDUK.
If you’d like to volunteer with muscular dystrophy, please get in touch at volunteering@musculardystrophyuk.org