How we can help people who have muscular dystrophy

Muscular dystrophy is a disorder that leads to weakness in the muscles which support and help the body to move efficiently. Muscular dystrophy is genetic, and people who have the condition have crucial information missing from a particular gene, which means they cannot make the proteins that are necessary for healthy muscles.

Speech and language therapy can help with the symptoms of muscular dystrophy and can work on different areas depending upon the individual's difficulties.

What is muscular dystrophy?

Muscular dystrophy is a congenital disorder which means a person is born with the condition and it is degenerative, meaning it gets worse over time. Muscular dystrophy leads to muscle weakness and means the body will be unable to move effectively. The rate at which symptoms develop, depends upon the individual, some will be apparent as a baby, some will not develop until later on into adulthood. It affects muscle tone and leads to muscle weakness.

There are different forms of muscular dystrophy, and depending upon which form a person has, it will affect different muscle groups. The different forms of muscular dystrophy include:

Congenital muscular dystrophy

Congenital muscular dystrophy is a collective term used to describe the symptoms of muscular dystrophy in babies and children.

Duchenne muscular dystrophy

Duchenne muscular dystrophy affects only boys. It is a common form and affects children aged 2 - 6. By the age of 10 children usually use a wheelchair. With this type of muscular dystrophy, the individual’s heart and lungs are monitored closely, as they are often affected severely.

Becker muscular dystrophy

Becker muscular dystrophy only affects boys. Symptoms are lessened in severity and seem to be apparent at a later age. Individuals may not require the use of a wheelchair.

Emery-Dreifuss muscular dystrophy

Emery-Dreifuss muscular dystrophy mainly affects boys and can start later in life. Individuals with this form have joint problems as well as upper body muscle problems and shin problems. The individual’s heart will often be monitored closely.

Limb-Girdle muscular dystrophy

Limb-Girdle muscular dystrophy can be apparent in girls and boys and affects muscles around the hip area and thighs as well as upper body. Symptoms can appear at any time and tend to progress slowly.

Facioscapulohumeral muscular dystrophy

Facioscapulohumeral muscular dystrophy affects boys and girls and symptoms can be apparent from late teens. This affects the muscles in the face, neck and shoulders however can also affect the lower leg. Symptoms can range from mild to severe.

Myotonic muscular dystrophy

Myotonic muscular dystrophy affects the muscles and causes them to shrink over time. The muscles in this form have trouble relaxing. In teenagers, problems can arise with cataracts and heart problems also. It is important to note all types of muscular dystrophy can be individual and no two people with the same form will be affected in the same way.

What causes muscular dystrophy?

Muscular dystrophy is a genetic condition. Muscular dystrophy occurs when a gene has crucial information missing. This means people do not make the essential protein needed for healthy muscle growth and development. Muscular dystrophy is a congenital, degenerative disease. This means that it will get progressively worse over time and is genetic.

How is muscular dystrophy diagnosed?

Diagnosis of muscular dystrophy is made by a medical professional, working within a multidisciplinary team and will take many different aspects into consideration. It may take a few assessments until a final diagnosis is given. This will usually be done at birth if the symptoms are apparent.

A speech and language therapist will carry out an initial assessment to determine whether an individual with muscular dystrophy has any speech, language, communication or swallowing difficulties.

What problems caused by muscular dystrophy can speech and language therapy help with?

Speech and language therapy can help with the symptoms of muscular dystrophy, especially with eating, drinking and swallowing. A speech and language therapist may also work on language and communication. Our speech and language therapists can help individuals who have muscular dystrophy with attention and listening problems, communication problems, swallowing difficulties, voice and speech problems.

How does speech and language therapy help muscular dystrophy?

Speech and language therapy can help with the associated problems of muscular dystrophy. This may include working with a speech and language therapist on eating, drinking and swallowing difficulties as well as improving communication and investigating different ways of communicating, including communication aids.

Speech and language therapy can help an individual to manage these types of difficulties relating to communication and swallowing. The therapist will work with not only the client but the family of that client too; this will allow for effective treatment and management of the areas a person may have trouble with.

The benefits of speech and language therapy are that a speech and language therapist will aim to give the client alternative ways of dealing with the effects of muscular dystrophy. This may then lead to the client feeling more motivated and have better self esteem.

What would speech and language therapy treatment for muscular dystrophy involve?

Speech and language therapy treatment will involve a speech and language therapist carrying out an initial assessment to assess a person’s level of communication and to devise a speech and language therapy plan. The speech and language therapy plan will be individualised to individuals specific needs and abilities and may include assessment, reports, reviews, therapy programmes, support groups, advice and education.

Summary

Muscular dystrophy is a congenital, degenerative disease. There are many different forms of muscular dystrophy and depending upon which form someone has, different muscle groups will be affected. Speech and language therapy can help with a number of issues that arise from muscular dystrophy and an initial assessment will show which areas are most important to work on initially.

If you feel you may benefit from speech and language therapy or would like any more information on our services please email office@slt.co.uk or call 0330 088 5643.