Multiple system atrophy (MSA) is a neurodegenerative disease leading to premature death. It causes brain cells to shrink resulting in problems with balance, movement and autonomic functions like blood pressure control, swallowing and speech. Some people with MSA say it feels like the disease traps them in their own bodies.
There is no known cause or cure for MSA, which strikes at random, usually when people are in their 50s. The latter stages of MSA can be extremely challenging and people often need around the clock care.
There are only around 3,000 people in the UK who have MSA, and it is extremely difficult to diagnose.
People with MSA, and their family and friends, often travel a long road of loneliness and isolation as so few people, including health professionals, have heard of the disease. Sometimes people spend years not feeling well and frequently being diagnosed with another neurological disease, such as Parkinson’s, only to be re-diagnosed with MSA at a later stage.
The need for support
As with other progressive conditions, carers often neglect their own health while looking after a loved one, so it’s really important that they find out about the support local hospices can offer.
And the MSA Trust is here to help hospice staff and other healthcare professionals who find themselves looking after people with MSA and their family and friends.
Our three specialist MSA nurses are happy to discuss the treatment of individual cases and draw on their expertise about symptom management and effective care and support for people, whatever stage of the journey they are at.
Equally important, our nurses and the Trust are here for anyone affected by MSA – the person with the disease, their family, friends and carers.
Our UK-wide support group network and online forum can help people affected by MSA come together and share experiences and local knowledge.
We would love to hear from any hospice colleagues who are engaged in supporting people with MSA as we would like to use these examples to raise awareness of the hospice/palliative support available and its usefulness, so that people do not feel afraid to access these services earlier than they currently do.
It would also be fantastic if readers could help us raise awareness about MSA. Better still you could become a member of the Trust – it’s free for health professionals to join and ensures you receive up-to-date information about MSA and how we can support you in the work you do.
Find out more on our website at www.msatrust.org.uk