26 June 2024

Sheffield Neuromuscular Services hold patient information day for myotonic dystrophy



 

Our specialist neuromuscular services held a successful Myotonic Dystrophy Patient Information Day in Sheffield the other week.

Patient Thomas Hobbs, who has lived with myotonic dystrophy, an incurable muscle-wasting disease, for over 10 years attended the day and said:

"I found the Myotonic Dystrophy Patient Information Day very informative. The first talk on research was very encouraging with tests going on and research providing positive results. It was good to find out about the patient registry and I will be signing on to it. It was fantastic to have so many professionals together on the day to give so much valuable advice. These events give patients and carers the opportunity to meet up and talk to others in the same situation and this is greatly appreciated."

Understanding myotonic dystrophy

Myotonic dystrophy is the commonest form of muscular dystrophy affecting multiple organs other than skeletal muscles, such as the heart muscle, muscles important for breathing, eyes, bowels, and pancreas and even the brain and skin. Impact on cognition can lead to poor concentration, memory, and ability to motivate self.

Myotonia (the inability to relax muscles at will) is another key feature of the condition; this can be demonstrated in the hands by the inability to let grip go following a handshake.

There are two types of myotonic dystrophy. Type 1 tends to be more severe and is more common than type 2. Type 2 is usually diagnosed in adulthood whilst type 1 can be present and diagnosed from birth through to late adulthood.

Here’s a few facts about our services and the specialist care and support we provide to patients from across the region and beyond, including South Yorkshire, North Derbyshire and North Lincolnshire as one of 24 MDUK Centre of Excellences in the UK:

  • Myotonic dystrophy is a complex condition, and patients require monitoring and interventions by many specialists such as cardiologists, respiratory physicians, physiotherapists, gastroenterologists and endocrinologists to ensure their condition is well managed.
  • Neuromuscular physiotherapy plays a key role in self-management, falls prevention, orthotics management and muscle strength maintenance
  • Our care advisor role service is paramount in helping neuromuscular patients to seek practical support to manage their condition, acting as a key as a key point of contact to share their concerns, in addition to signposting patients to mental health services, other community and social care services when needed.

ENDS

 



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