The charity Muscular Dystrophy Campaign is calling for more specialist care workers in the Midlands. There are currently only three, supporting around 11,000 patients across the region.
There are many different types of the condition, and the severity of the symptoms varies from person to person, but in all cases the muscles gradually weaken over time.
The charity's report says:
- People are at a risk of misdiagnosis.
- There are major delays for patients in receiving check-ups.
- There is a lack of NHS support for people with rare conditions in the Midlands.
- Patients are concerned that GPs lack specialist knowledge.
Karen Bayliss from Birmingham has Facioscapulohumeral Muscular Dystrophy (FSH), a condition that causes weakening of the facial, shoulder blade and upper arm muscles.
Nic Bungay from the charity says that specialist carers offer practical help, by going along to clinic appointments with patients, and emotional support when people are first diagnosed.