Respiratory Management

Children and young people with myotubular and centronuclear myopathies more usually experience some breathing problems, with many requiring a tracheostomy (small incision by surgical procedure into the windpipe) to aid their breathing, and others sometimes require non-invasive ventilation (via a nose or face mask) for several hours of the day and/or night.

Getting breathing right can really help improve quality of life and it is important that children and young people have a good multidisciplinary team involved in their breathing care and access to modern equipment.

We hope that the information and personal perspectives provided here will help guide you on respiratory management. We have tried to give as wide a perspective as possible.

A forthcoming Respiratory Management Webinar will take place on Saturday 28th April 2012 at 5pm GMT, and has been set up in conjunction with Cure CMD and Joshua Frase Foundation. Please see details below about how to join the Webinar.

Meanwhile, if you have a question for the panel that you would like us to put forward on your behalf, please email wendyhughes@myotubulartrust.org

Professor Anita Simonds Presentation, given at our 2011 Family Conference

Join Our Webinar on the Management of Breathing and Respiratory Issues
Date: Saturday, April 28, 2012
Time: 5.00pm UK GMT, 9.00am US PDT
Meeting Number: 571 992 629
Meeting Password: Breathing12

-------------------------------------------------------
To join the online meeting (Now from mobile devices!)
-------------------------------------------------------
1. To dial in from UK, click here to go to the Respiratory Webinar
2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: Breathing12
4. Click "Join".

-------------------------------------------------------
To join the audio conference only
-------------------------------------------------------
To receive a call back, provide your phone number when you join the meeting, or call the number below and enter the access code.
Call-in toll-free number (US/Canada): 1-877-668-4490
Call-in toll number (US/Canada): 1-408-792-6300
For UK toll free number 08-002061177
For UK toll number +44 20 31064789
Global call-in numbers:
Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf

Access code:571 992 629

-------------------------------------------------------
For assistance
-------------------------------------------------------
1. Go to https://kponline.webex.com/kponline/mc
2. On the left navigation bar, click "Support".

Breathe On (UK)

Breathe On UK is a national charity dedicated to supporting the families and carers of young people who are life-dependent on mechanical breathing, or long term ventilation (LTV).