May - Myasthenia Gravis Association

Did you see the posters outside Sainsbury inviting you to smile? You may have been puzzled by the fact that the faces on the poster seemed to show no emotion. It’s impossible to smile if your facial muscles have become weak. This is only one of the symptoms that can make Myasthenia Gravis an embarrassing condition to endure. Myasthenia Gravis is an auto-immune disease which is characterised by fluctuating, sometimes fatal, muscle weakness. The body’s immune system attacks and damages the nerve signal reception areas on the muscles so that 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. 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. A safe support network can offer that priceless service – someone at the end of a ’phone who really knows what you are trying to cope with.

Fundraising is important to raise money for research. Recent research has resulted in better understanding and management of the disease but there is not yet a cure. The Institute of Molecular Medicine in Oxford is hopeful of a breakthrough if the momentum can be maintained. Money is also spent on producing and distributing leaflets in order to share information and raise public awareness of this disease. The chairperson of the local branch has asked me pass on thanks and appreciation for our continuing support.

The web site is www.mgauk.org

Helpline: 0800 919922