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Muscular Dystrophy

Muscular Dystrophy and Muscular Atrophy

What are they?

Muscular Dystrophy is the name given to a group of diseases which cause progressive weakness in the muscles due to a genetic defect. Muscular Atrophy describes another group of diseases which cause a progressive degeneration of the spinal nerves and wasting of the muscles that they control. Muscular Dystrophy and Muscular Atrophy frequently run in families and more often affect boys rather then girls.

Living with Muscular Dystrophy and Muscular Atrophy

Duchenne Muscular Dystrophy is usually only seen in boys and generally appears by the age of three; this progresses so that by the age of ten the young person is often unable to walk. Intellectual ability is usually on a par with their peer group but the condition can affect memory and verbal fluency; which may give the appearance of a learning delay. The life expectancy of this condition can be around 20 years.

Peroneal Muscular Atrophy affects both adults and young people but seldom shortens their life expectancy. Degeneration of the muscles may lead to the use of a wheelchair.

Spinal Muscular Atrophy affects both sexes, but is more common among boys, symptoms usually develop between the ages of three and seven. Weakness spreads gradually, usually allowing use of the legs for about ten years after its onset. Life expectancy is not affected except in the chronic childhood form.

Practical tips

Further questions to discuss with parents/ carers could include:

Pressure sores may occur and you should check frequently for skin redness or damage. If the skin begins to break down seek treatment immediately- remember a pressure sore can develop in two hours, but can take many months to heal.

Further information

Discuss with the individual and/ or their parents/ guardians the extent to which help is needed and learn any practical tips that they my have to offer. Information may also be made available via parents/ guardians from the young person's medical supports which may offer further advice.

Support organisations

Muscular Dystrophy Campaign

Telephone: 020 7803 4800

Email: info@muscular-dystrophy.org

Website: www.muscular-dystrophy.org

Jennifer Trust for Spinal Muscular Atrophy

Telephone: 0178926 7520

Website: www.jtsma.org.uk

 

 

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