Facioscapulohumeral muscular dystrophy (FSH) affects over 1,300 people in the UK – join us to fund research. We're here for you.

Facioscapulohumeral muscular dystrophy (FSH)

Facioscapulohumeral muscular dystrophy (FSH) is the third most common muscular dystrophy affecting over 1,300 people in the UK (and at least 140,000 worldwide).

The degree of weakness or disability can vary widely between different affected members in a family, but can show even greater variation between people in different families. For some, it can result in weakness not only of facial muscles and shoulders/ upper arms, but also of additional combinations from neck, forearms, wrists, fingers, hips, legs, ankles and the back muscles. There is currently no treatment or cure for FSH.

The Muscular Dystrophy Campaign provides expert advice and support for individuals living with FSH and their families, and for health professionals.  We lead the search for treatments and cures for muscle-wasting conditions.

In this section you'll find the latest information about FSH and helpful resources.

The Muscular Dystrophy Campaign supports individuals and families by:

  • funding FSH research projects and providing information on research progress
  • working with TREAT-NMD to establish and fund a new FSH patient registry
  • supporting the training and development of the next generation of scientists and funding clinical trials co-ordinators in the drive towards potential treatments for muscle-wasting conditions
  • working with, and providing training and education for, NHS-funded care advisors
  • taking a leading role in driving NHS support for neuromuscular networks and spearheading campaigns to improve access and quality of specialist care
  • offering advice and information and enabling people to overcome difficulties through our advocacy service
  • providing grants towards specialist equipment to help people to live as independently as possible
  • helping people to connect with each other through our local Muscle Groups, online via TalkMD, at conferences and events; and through Trailblazers, our national network of young disabled people.

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There is a role for everyone in the fight against muscle-wasting conditions.  We are a small but strong community of people in the UK and we are determined to win this fight, together.

There are opportunities to get involved in a variety of ways, such as:

Action on FSH Appeal

The Muscular Dystrophy Campaign is committed to developing an understanding of the underlying cause of FSH and how it can progress in order develop future treatments and cures.  We have launched the Action on FSH Appeal to raise the funds needed for the final year of two vital research projects, and to establish a new registry of people with FSH.  Please help us to reach the £45,000 target to make this possible.

Support and information

We are here for you and your family.  For more information about FSH or for support, contact our freephone support line or send us an email (Monday to Friday 8.30am - 6pm): 0800 652 6352 (freephone)  info@muscular-dystrophy.org

Beating muscle-wasting conditions such as FSH is a massive challenge requiring a collective effort, but with advances made in research over the last 20 years there has never been a better time to join us. Together, we can win the fight.

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