We can now share with you our latest guide – Ventilation and Duchenne: Frequently Asked Questions.
About this book
The guide has been written following evidence gathered from 300 members of DMD Pathfinders. This told us about many differing practices and conflicting advice about the best respiratory practice locally, nationally and internationally.
Dr Jon Hastie and Mark Chapman (both ventilator users and founders of DMD Pathfinders) presented this evidence in 2013 when they chaired an International Respiratory Meeting in London to discuss standard of respiratory care for adults living with DMD.
Out of that discussion came the need for this booklet to address common questions and concerns.
What is in this book?
In order to express a preference for invasive or non-invasive ventilation (NIV), individuals living with DMD need access to current and relevant information.
This booklet contains information on starting ventilation (when, what age, what type) and what a Respiratory Clinic will assist you with. We share with you range of different NIV masks and other interfaces like a SIP mouthpiece and information about how this compares to a tracheostomy (invasive ventilation).
You can also find out about different types of ventilators and other equipment like cough assist machines, humidifiers and nebulisers.
Members shared with us their top tips on dealing with congestion and secretions, traveling with a ventilator and dealing with an emergency.
Discover how better breathing might affect your sleep, ways to eat and just where do you hang your machine whilst heading out for a night on the town or playing football….?
Ventilation that is introduced at the right time and well managed, dramatically increases life expectancy. Good ventilation allows people to continue living healthier and fulfilling lives.
Thank you to our members and Trustees who have put this booklet together and contributed some valuable experience about using different types of ventilation. Also thank you to Action Duchenne who will be printing some hard copies to support our work.