Today (20 June) is FSHD Awareness Day. Now, and all year round, we are committed to being there for you and the other 2,500 people in the UK living with the condition from the point of diagnosis onwards.
What is FSHD?
Facioscapulohumeral muscular dystrophy (FSHD) causes muscles to weaken and waste over time, leading to increasing disability. It is caused by a genetic mutation that causes production of a toxic protein in the muscle, which kills the muscle cells.
FSHD is a genetic condition that can be diagnosed at any age. The severity can vary widely between individuals – even within the same family. Around 10 to 20 percent of people with FSHD eventually require a wheelchair, yet up to one-third remain unaware of symptoms at least into old age.
How we’re here to help
We are the leading charity for individuals and families living with FSHD. We understand the everyday challenges of living with the condition, so we’re here to help with information and advice, together with emotional and practical support. This includes:
- Our FSHD factsheet, which provides information about the condition and managing it
- Our alert cards and care plans to help you inform emergency healthcare professionals about your condition
- Our online forum, where you can speak to other people with FSHD and other muscle-wasting conditions
- Our peer support network, which puts people in touch with others living with the same condition
- Our free helpline, which provides support and information
We know with everything going on right now this may be a worrying time for you and your family. We are doing everything we can to keep you informed and supported, from regularly updating our guidance on Covid-19, to calling on the Government to provide clarity on what it means for you and your family. You can:
- Read our latest coronavirus guidance
- Sign up for a free wellbeing coaching session with Kinesthetica Coaching
How you can get involved
- Download and share our FSHD infographic
- Watch this Q&A with Muscular Dystrophy UK’s Director of Campaigns, Care and Support, Rob Burley, and Liz Williams and Sheila Hawkins, who have FSHD
- Read this blog by Chris Stennett, who has FSHD, about life in lockdown and his Ironman training
- Share your experiences of living with FSHD or of life in lockdown with us
- Get involved on social media using the hashtags #WorldFSHDDay and #CureFSHD
- Help us to continue to support people living with FSHD and other muscle-wasting conditions by making a donation