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Family Guide to Muscular Dystrophy

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Family Guide to Muscular Dystrophy
Muscular Dystrophy also known as MD is the name given to a group of diseases that cause loss of muscle mass and gradually causes muscles to weaken. Muscular Dystrophy is a progressive condition and will eventually lead to disability.

There are many different types of muscular dystrophy, each have different symptoms and some range from having mild symptoms to others being much more severe. As of yet Muscular Dystrophy cannot be cured, there are various treatments such as medications and therapy which can help and manage the symptoms of the condition.

There are many different types of Muscular Dystrophy all of which affect different muscles, how the conditions affect an individual varies significantly from person to person. These conditions are usually inherited but can sometimes just occur with no family history. The different types of Muscular Dystrophy include:

  • Duchenne muscular dystrophy
  • Myotonic dystrophy
  • Becker's muscular dystrophy
  • Facioscapulohumeral muscular dystrophy
  • The limb-girdle muscular dystrophies
  • Emery-Dreifuss muscular dystrophy
  • Oculopharyngeal dystrophy
  • Distal muscular dystrophy
  • Mitochondrial myopathies

In most cases Muscular Dystrophy is caused when certain genes in the body which are responsible for healthy muscle structure, protection and function become mutated and damaged. The mutations and damage that’s caused mean that the cells which should be protecting and maintaining your muscles can no longer accomplish the job; this is what eventually leads to weakened muscles and disability.

Symptoms of MD and the age of onset depend on the type of Muscular Dystrophy that is present. The main symptom for someone suffering from MD is progressive weakness in the muscles. This will vary greatly on the type of MD. Depending on what type of MD is present will show different signs and symptoms by each affecting different muscle groups. It is advised to seek medical advice from a GP when there are signs of weakened muscles such as falling or clumsiness.

Living with Muscular Dystrophy

First things first a diagnosis will need to be made. There are different methods for diagnosing the various types of muscular dystrophy, a doctor may advise testing for MD, even though the problem could be due to another cause. However diagnosis will put peoples minds at rest and recognising symptoms when they first appear and distinguishing which muscles are affected is particularly useful in helping to diagnose the different types of MD. Diagnosis will involve investigating symptoms, examinations, blood tests, discussing previous family history and biopsy of the muscles.

As previously stated there is no cure for Muscular Dystrophy but exceptionally great therapies and medication treatments to help. Treatments include physiotherapy; to help keep the joints and body mobile, Steroids; certain types of MD will require steroid medication to maintain strength, exercise; is a great way of keeping muscles at a good strength and help with mobility, creatine; which has been found to improve strength without having any side effects and in some severe situations surgery may be necessary to correct physical problems such as droopy eyelids and tight joints.

Muscular dystrophy can be physically and emotionally draining, it can affect everyday life. Support from family, friends, groups and organisations will help the individual feel as though they have people to talk to and share concerns with. The support will be useful and allow people to come to terms with the condition. There is also a huge amount of support people who care for MD sufferers support groups and organisations can provide useful information, advice and support.

Practical Aids

The many diverse symptoms of Muscular Dystrophy make it impossible to itemise all the ways in which someone’s life might be affected. Therefore a variety of aids and supports that might be useful to people who suffers from MD are below.

Bathing Aids

Weakened muscles can cause mobility issues for the sufferer and this can eventually lead to disbability. Products such as aquila bath lifts or bath lifts for children and  shower chair.

Dressing & Comfort Aids

Muscular Dystrophy can make simple tasks extremely difficult. To ease the frustration and prolong independence, sufferers can take advantage of button & zip pullers, self-binding shoe laces, double handle leg lifter and many other dressing aids.

Paediatric Aids

For a child with Muscular Dystrophy they may feel very limited to what they can do, play and development can really bring a child on and gives them self-confidence. Activity tables are also a great way for them to interact.

Mobility Aids

Muscular Dystrophy can be a serious and leads to immobility and disability. To offset the effects of this, people can choose from an array of crutches, rollators, support rails and wheelchairs, amongst many other aids to mobility.

Support and Information

Families supporting a relative who is suffering from Muscular Dystrophy might find the following organisations and websites useful as sources of advice, information and other resources.

Useful products for Muscular Dystrophy

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