August - Myasthenia Gravis Association

A while ago now there were posters that invited you to smile. You may remember being 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 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 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 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 web site is worth a visit and has a short video which is very helpful in understanding this condition.

www.mga-charity.org

Helpline: 0800 919922

July - Multiple Sclerosis Society

Multiple Sclerosis is a progressive disease of the central nervous system.
The severity of the disease varies markedly among sufferers and is characterised by a multiple, patchy pattern of disabilities, hence its UK name.  The symptoms may vary in site and time with unpredictable episodes of disease activity and remission.
It often starts in early adult life and the type of long-term damage it causes will depend on which part of the nervous system has been primarily affected.
As well as obvious disabilities, sufferers experience invisible symptoms such as numbness and unpleasant tingling - a reminder that we can’t tell how well someone is just by looking.
A friend of mine has been treated with disapproval when a stagger has obviously led someone to believe that she has been imbibing alcohol early in the day!
The Cheltenham & North Cotswold Branch of the MS Society has been in existence since January 1984 and aims to be self-supporting although allied to the national society, and they are very appreciative of our help.
Any money raised locally is always used locally.
There is a very strong emphasis on welfare and support for the whole family.
The current financial pressures mean that funds are short and the group is anxious to be able to continue to help with respite care which gives such a valuable rest to the carer.
With the awareness that suffers of MS may have young families there is concern for the needs of these young carers and there is a specific young carers fund.
Young carers are being helped towards the cost of driving lessons as this is such a valuable skill for them to acquire.
Money is also made available for people with MS who want to access further education.
The Society wishes to be accessible for anyone affected by MS and can be easily contacted.
A monthly newsletter is produced and regular meetings are held.  Carers are invited to coffee mornings at accessible local venues such as garden centres or supermarkets.
The social group for younger or newly diagnosed people also has regular meetings and the new community choir is proving popular.
Hydrotherapy classes are held at the Leonard Cheshire Home.  Exercise groups include a conductive education class and a physiotherapy class, these are run by professionals and are therefore expensive for the support group to provide.  
If anyone would like to offer voluntary help please ring the Branch Contact on 01452 862822.