Suzanne is a researcher at the University of Sheffield and Pathfinders Neuromuscular Alliance. She lives with spinal muscular atrophy (SMA). Suzanne shares her latest research projects on what it truly means to breathe, her own experiences of bone health and why this study is important, and her excitement about being back on our Northern Ireland Council.
“Plenty of people don’t breathe in the conventional way with modern ventilation”– my research projects as someone with a muscle wasting condition
I’ve always been fascinated by the world of research and how I could conduct my own research to support others living with muscle wasting conditions. After completing my undergraduate degree in Communication with Counselling, I did my PhD in Resilience and Emotional Intelligence in Carers. Just before finishing my PhD, I joined the Pathfinders Neuromuscular Alliance, a charity run for and exclusively by people living with muscle wasting conditions.
Using research to improve care in our community
For the first couple of years at the Pathfinders Neuromuscular Alliance, I was working on a project about the transition to adult care for people with disabilities, as well as exploring issues in social care for people with neuromuscular conditions. After working there for four years, I moved on to become the Research Manager at Pathfinders.
A project that I’m really excited to be working on as a Research Manager, is one called Cripping Breath, working with the University of Sheffield. This is a five-year project focused on respiration and what it truly means to breathe.
“Up until recently, breathing was simple: you inhale, you exhale. But that definition doesn’t hold up anymore.”
With modern ventilation, plenty of people don’t breathe in the conventional sense, yet they’re very much alive. Society has had to adapt, and this project is exploring the social and political theories surrounding that shift.
My role is collecting stories about people’s experiences with ventilation. I’m currently working with a group of ten people, all of whom have some kind of experience with ventilation, whether that’s using BiPAP every night or having a one-off ventilation experience in the hospital. It’s been fascinating to explore how people understand and describe their own breathing.
Another project that has been in the works for a while, is research into the bone health of people living with muscle wasting conditions. This is a collaboration with a UK-based team and Jared Wong, a bone health specialist, and is a project I have a great deal of interest in due to having several fractures myself over the last few years.
The reality of fragile bones
I’ve had four big fractures in recent years. Most of them happened doing really simple things. I grew up understanding that my bones were weaker because they didn’t have as much impact when growing. I didn’t fully understand just how weak, fragile and distorted they would be.
“When I went to the hospital for the breaks, the doctor said he’d never seen anything like it before; they were like a baby chicken bone.”
This is why I’m incredibly passionate about our bone health study and improving bone health for people with neuromuscular conditions, ideally before the fractures happen!
Recovery after my breaks was a lot harder than for most able-bodied people. With each break, my care needs have increased, which creates its own challenges for mine and my husband’s relationship. I’ve been married to Colin for four amazing years now. We live with our retired greyhound and have a great little life together. Having 24-hour care though, means our home can be pretty cramped. There’s no spare room in our home which means there’s nowhere the carer can go if me and Colin just want to relax on our own in the lounge, for example. We’ve been looking for a new place for a while now that better suites our needs so hopefully something will show up soon.
Rebuilding the Northern Ireland community
One of the most heartwarming events I attended recently was a muscle group meeting just before Christmas. It was the first time in years that Muscular Dystrophy UK have had a real presence in Northern Ireland, and it felt amazing to have everyone back together in the same room again.
Seeing familiar faces and meeting new ones reminded me how strong the Northern Ireland community is.
“I’ve been involved with the Northern Ireland Council for as long as I can remember, and I’m so pleased to be back on the board now that the council has started back up again.”
It feels great to have the support of Muscular Dystrophy UK in Northern Ireland. I was part of their psychological support initiatives while working on my PhD. The charity was incredibly helpful connecting me with people for my research, so I’m glad they can start supporting others again in my area. It’s so important to have that sense of community, to feel included, and to know that Northern Ireland is still part of the bigger picture.
Join our Information Day in Northern Ireland
Join us on Wednesday 4 June 2025 for our free Information Day in Northern Ireland for adults living with a muscle wasting condition – where Suzanne will also be speaking about her research and lived experience.
