‘Hear my voice’ and our video resources

Published Date
Lloyd Tingley
Supporting independence
Sanah Rauf

With the new September school term around the corner, lots of families will have children starting new schools and young people heading off to college or university. In addition to taking a look at our education guidelines, now is also a great time to take a look at our ‘Hear My Voice’ video.

The video is of two teenagers, Zoe and Sam, talking about what it’s like to live with a muscle-wasting condition. It was filmed and developed by a group of young people from the South West who talk about some of the issues that matter to them. Zoe and Sam give advice and suggestions to other teenagers their age and talk about their experiences, both good and bad, and their desire not to be defined by their condition.

This video was made as part of a project funded by the Evan Cornish Foundation and The Austin and Hope Pilkington Trust in partnership with specialist psychologists Dr Sadie Thomas-Unsworth and Jennie Norris.

In addition to this, Muscular Dystrophy UK had launched a range of other information videos about your care and your condition.

One video outlines the specialist healthcare which families and individuals affected by muscle-wasting conditions can expect from a specialist neuromuscular centre. It was filmed at the John Walton Muscular Dystrophy Research Centre in Newcastle and features interviews with the different members of their neuromuscular team who explain their role in managing the healthcare of someone with a muscle-wasting condition.

We have also launched seven additional videos on different muscle-wasting conditions. These films feature people living with each condition and show why it is so important to access specialist healthcare. The videos also describe the wide range of resources that are available from Muscular Dystrophy UK to support and advise all individuals and families living woith muscle-wasting conditions.

We have also produced videos for the following more common neuromuscular conditions:

Becker muscular dystrophy

Charcot-Marie-Tooth disease (CMT)

Congenital muscular dystrophy

Duchenne muscular dystropy (DMD)

Facioscapulohumeral muscular dystrophy (FSHD)

Myotonic dystrophy

Spinal muscular atrophy (SMA)

All of these videos include interviews and comments from our supporters across the country.

Senior Neuromuscular Outreach Manager Bobby Ancil said:

All our videos are very popular with people living with muscle-wasting conditions, health professionals and NHS commissioners and one of the films recently featured on BBC News. However, we want to make sure everyone gets to know about them. They are one more way that we are helping to provide information and support to people affected by neuromusclar conditions.

For more information about any of the conditions we represent and the support we are able to offer, get in touch with Muscular Dystrophy UK on our Freephone helpline 0800 652 6352 or at info@musculardystrophyuk.org.


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