This month we are supporting suffers of a disease that is not well known and that can be embarassing and frightening for its sufferers and their families.
Myasthenia Gravis is an auto-immune disease which is characterised by fluctuating, sometimes fatal, muscle weakness. This means that the body’s immune system attacks and damages the nerve signal reception areas on the muscles. The nerve is not able to cause muscle contraction and the result is apparent weakness. As any muscles can be affected the symptoms can vary greatly and can be triggered by the onset of infection or stress of any kind, physical or emotional.
It can be difficult for a GP to diagnose and it is also hard for family and friends to understand that someone can seem perfectly normal one moment but droopy and listless only a few hours or even minutes later. Simple things that we take for granted like eating, seeing, talking and laughing can become difficult or even impossible.
Although it is rare under the age of 10, Myasthenia Gravis can affect anyone of any age, sex or race. Our local support group is working to raise awareness of the condition in children since its rarity makes it even harder to diagnose. Approximately one person in every ten thousand may be suffering from this disease in the UK at any one time.
The Myasthenia Gravis Association has headquarters in Derby. It works through regional organisers and local branches to offer support to people suffering from Myasthenia and their families. The Gloucestershire branch meets every four months when they will aim to address any problems that have arisen, share news of national events and, not least, go out for a meal together. The aim of meeting as a group is to create links with other people who understand what the sufferer is going through. It is also a valuable opportunity to share experience of available treatment. Having established a contact it can be invaluable to have a friendly voice at the end of the phone in times of difficulty.
Fundraising is important to raise funds for research. Recent research has resulted in better understanding and management of the disease but there is not yet a cure.
Click here to go to the Myasthenia Gravis Association
Saturday, 1 May 2010
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