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Rare Disease Day takes place on the last day on 28th February (or 29^th February  in leap years)—the rarest day of the year. It is a worldwide opportunity to increase awareness and advocate for those living with rare conditions. Rare conditions are conditions that affect fewer than one in 2000 people. That’s about 300 million people worldwide living with a ‘rare’ condition. Neuromuscular conditions are one example of a group of rare diseases which cause muscles to weaken and waste. 

(hereby, Pathfinders) is a user led organisation supporting adults with neuromuscular conditions. This means we are run for and by people with muscle-weakening conditions. I write this blog as the Research Manager in Pathfinders and Lead Community Researcher on Cripping Breath. Pathfinders promotes choice, control and quality of life for teenagers and adults with neuromuscular conditions in the UK. It conducts research and campaigns for improved standards of health and social care and provides advice, guidance and support to teenagers and adults with neuromuscular conditions on issues such as independent living, housing, employment and welfare rights. Pathfinders also provides social opportunities, information and advocacy on issues that matter to adults with muscle-weakening conditions.

We know that many people with muscle weakening conditions use non-invasive ventilation (i.e CPAP/BiPAP machines) and invasive ventilation methods  (i.e a tracheostomy) as their respiratory muscles are weakened. Using these machines can support daily living and help with some of the side-effects caused by our respiratory systems not working efficiently (i.e headaches, fatigue, recurrent chest infections). Ventilation is an incredibly important part of preventing and treating respiratory illness related to our conditions.

The theme of Rare Disease Day 2025 ‘is more than you can imagine’. As an adult living with Spinal Muscular Atrophy (a rare disease), I believe that ventilation means SO much more than the medicalised description I described in the previous paragraph. To me, ventilation is more than you can possibly imagine. And that’s where Cripping Breath comes in! Cripping Breath: Towards a new cultural politics of respiration is a 5-year interdisciplinary programme of research funded by a Wellcome Trust Discovery Award. The project is taking place at the University of ��«Ӱҵ in partnership with Pathfinders Neuromuscular Alliance, ,  and the NHS.

More than you can imagine

‘Cripping Breath’ will explore respiration and ventilation (i.e. CPAP, BiPAP or tracheostomy). We want to “shake up” what it means on a social, cultural and political level to live on/with ventilation through using research methods that centre experiences of ventilated people. Respiration and respiratory health is increasingly becoming an important social and political topic. For example, the complexities of life in a post pandemic future, increasing air pollution and associated health risks and how social/economic barriers can negatively affect respiratory health (i.e. inadequate housing standards). Cripping Breath recognises that there needs to be a cultural and political shift to think in new ways about respiratory health, for all people.

Cripping Breath understands that the expanding community of ventilator users are often not seen in contemporary social theory of respiration and ventilation. There is also a lack of understanding in the general public about what it means to use a ventilator. Too often, ventilation means someone’s body is failing or coming towards the end of life. When in reality, those who use ventilators often have very different experiences. Experiences we want to learn more about. 

We will do this through lots of different methods including the arts, narrative research, archival methods and ethnographic approaches. I am working on the narrative stream of the research leading a group of community researchers with lived experience of ventilation to explore the everyday stories of ventilated people.

Here at Pathfinders, we are aware that our experiences of ventilation goes far beyond any clinical or medical context. Our previous peer-led research told us about how people felt anxious about using their ventilator in public (). We also know that living life sustained by medical devices increases our reliance on electricity. We know that using a ventilator can change how or who looks after you in hospital. Which is one of the many reasons we (Pathfinders) have partnered with Cripping Breath to explore these issues on a social, cultural and political level.

Within our community, these lived experiences of life on/with ventilation are incredibly common. But in reality, due to small numbers of people affected by each rare disease, they are often less well understood by the general public. We hope that this blog post has told you a little bit more about ventilation and the work that we are doing at Pathfinders and Cripping Breath. Please take a moment today to visitand help to raise awareness today and every day.