My Life with Ventilation: a Cripping Breath and Pathfinders Event

My Life with Ventilation: a Cripping Breath and Pathfinders Event

An information evening exploring ventilation and respiration among people with muscle-weakening conditions.

By Pathfinders Neuromuscular Alliance

Date and time

Location

Online

About this event

  • Event lasts 1 hour 30 minutes

This event is a deep-dive into ventilation and respiration for people with muscle-weakening conditions through lived experience stories and community voice. Our aim is to bring the talk of ventilation out of the clinic and into real life: into our travelling ambitions, love lives, parenting journeys, and our everyday lives.

The session will be led by speakers with lived experience of ventilation discussing the relationship between their ventilation use and other important parts of living and identity such as travelling, parenting, intimate relationships and representation of ventilation in mainstream media.

Speakers will give a short presentation on these topics before an opportunity for event attendees to ask questions and discuss experiences. Attendees will also have the opportunity to learn about how they can share their experiences through participating in the research. The research project Everyday Stories of Breathing and Ventilation, part of a larger Wellcome-Trust funded project at the University of Sheffield called Cripping Breath. The aim of the research is learn more about people's experiences of using ventilation, and the researchers are looking for people to take part in two online research interviews.

There will be an open Q&A as part of the session.

Artwork by Inertia Creative

Frequently asked questions

Will there be BSL interpreters for the session?

Yes, BSL interpreters will be present for the session.

Organized by

Pathfinders Neuromuscular Alliance is a user-led charity (reg no.1155884) which promotes choice, control and quality of life for teenagers and adults with neuromuscular conditions in the UK.

Free
Sep 22 · 10:30 AM PDT