As our planet faces more extreme weather events and rising temperatures, people with muscle wasting conditions are experiencing unique challenges — yet our voices are often missing from conversations about climate change.
The effects of climate change on our community
Now, researchers are working to change that. Professor Sanjay Sisodiya, from the UCL Queen Square Institute of Neurology, has expanded his work to include the impact of climate change on people living with neuromuscular conditions.
“My research in this area originally focused on people with epilepsy, but discussions with the team at Muscular Dystrophy UK showed that there might also be effects for people with neuromuscular and many other neurological conditions. We have therefore created a survey to learn about the direct experiences of climate change for people with muscle wasting conditions.
“Our aim is to work out whether events like heatwaves might cause or worsen problems for people with these conditions, or perhaps relieve some issues their condition might cause them.”
“To understand these impacts better, we would like to learn more about how people’s living conditions (for example, if they have access to air-conditioned spaces), their medications and particular diagnoses might influence their experience of events like heatwaves or floods. By learning this, we hope to target our future research to areas where it might most be needed. We also hope to raise awareness of the risks posed by climate change.”
“I have to avoid being outside for too long in the heat” — Lauren’s story
For Lauren, who lives with SMA type 2, the effects of climate change are extremely difficult.
“Ever since we’ve started to experience hotter summers and colder winters, I have noticed some significant changes in the way my condition reacts to the temperature. I experience swollen joints, muscle fatigue and general lethargy in ways that I have never experienced before, as well as having knock-on effects to my social life which puts strain on my relationship and friendships.
“Due to the changing climate, I often have to cancel and rearrange plans or even cancel appointments. I also struggle significantly with my wheelchair in the heat, as the chair is made from thick, black plastic or metal which heats up in the sun, making it almost unbearable to sit in and meaning I avoid being outside for too long in the heat.”
“Because of the hot weather, skin breakdown is often unavoidable, causing skin issues that are painful and difficult to manage which impact physical and mental wellbeing.”
“All of these experiences are becoming more frequent due to the changes in climate. I think it’s so important that we begin to recognise and talk about the impact on our conditions that we face due to the changing climate as it’s something that will eventually impact us all.”
“It’s very difficult to plan ahead” — Tanvi’s experience
Tanvi, who also lives with a muscle wasting condition, describes a more love hate relationship with temperature. For her, mild warmth can bring some relief — but the extremes are rather challenging.
“I really enjoy warm weather — my muscles can be more relaxed, and I have less pain. However, with extreme heat, I get fatigued. Sometimes I even have to dehydrate myself due to limited care hours so that I don’t need to go to the loo too often, and that becomes a serious issue.”
On the other end of the spectrum, cold weather creates different, but equally difficult, problems.
“The cold worsens my circulation. I find it harder to move, and wearing extra layers can limit where I can go. It affects when and where I can work and socialise.
Changeable extreme weather is one of the biggest effects of climate change, and one that’s very difficult for the community to deal with.
“It’s very difficult to plan ahead as my muscles seize up when there is a sudden change.”
Taking action
Professor Sisodiya’s team hopes to bring more visibility to these issues and ultimately improve the lives of people affected.
“We’re hoping to better understand people’s real-world experiences so that we can direct future research where it’s most needed and raise awareness of how climate change is impacting people living with neurological and neuromuscular conditions.”
