We’re marking FSHD Awareness Day 2020

Published Date
Laura Burge
Liz Williams, peer support volunteer, on the telephone. Copyright Chris Donovan

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.

You can find out more about FSHD in our factsheet.

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:

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:

How you can get involved

Keep in touch