Muscular Dystrophy (MD) is a group of inherited genetic conditions that gradually cause the muscles to weaken, leading to an increasing level of disability.
MD is a progressive condition, which means it gets worse over time. It often begins by affecting a particular group of muscles, before affecting the muscles more widely.
There are many different types of MD, 4 more common types are:
- Duchenne muscular dystrophy – The most common and most severe type of MD. It causes muscles weakness mainly in the legs and upper arms. DMD usually affects boys rather than girls however, in rare cases, girls or women with the Duchenne gene can develop muscle weakness. The weakness starts early in childhood and gradually increases, affecting the child’s ability to walk.
- Becker muscular dystrophy – Signs and symptoms are similar to those of Duchenne muscular dystrophy but tend to be milder and progress more slowly. Symptoms generally begin in the teens but might not occur until the mid-20s or later.
- Limb-girdle muscular dystrophy – Causes weakness in the muscles around the top of the arms and legs, which is why ‘limb girdle’ is used in the name of this condition (hip and shoulder muscles are usually affected first). People with this type of muscular dystrophy might have difficulty lifting the front part of the foot and so might trip frequently. Onset usually begins in childhood or the teenage years. They can affect men or women.
- Facioscapulohumeral muscular dystrophy – Causes muscle weakness which typically begins in the face, hip, and shoulders. The shoulder blades might stick out like wings when arms are raised. Onset usually occurs in the teenage years but can begin in childhood or as late as age 50.
Symptoms
The main symptom of MD is muscle weakness. The muscle weakness itself may be mild, moderate, or severe, this varies between the different types of MD. The different types of MD vary as to how quickly or slowly the weakness progresses.
Another common symptom of MD is having a difficulty controlling movement.
Sometimes there may be other symptoms depending on the type of MD. These are:
- Muscle wasting – in which the muscles become thin.
- Muscle hypertrophy – in which the muscles are bulkier than normal, even though they work less well.
- Aches or pains in the muscles.
- Contractures – in which joints are tight, due to tightness of the muscles or reduced movement of the joints.
- Developmental delay in a child (this means that the child’s ‘milestones’ of development are later than usual).
- Some types of MD can affect the heart. In some cases, there may be symptoms of heart disease without much in the way of muscle weakness.
Symptoms may start anywhere between birth and middle age, depending on which type of MD is involved.
There are also differences as to which parts of the body are affected. Different types of MD affect different muscle groups.
Education Strategies
- Children and young people with MD are all different and will need personalised/catered care and/or equipment to support their specific levels of need. Due to the nature of MD, changes will have to be made to the care and equipment as their needs change.
- Consider accessibility of the school site: is there step free access? Lifts? Can the child or young person move independently around the site? Is there wheelchair access should the child’s mobility deteriorate?
- Is the toilet appropriate for the child or young person to use to maintain their health and dignity? Read the Changing Places guide, using the following link to create a suitable environment: Changing Places Toilets (changing-places.org)
- Will they need an Intimate Care Plan? Use our templates to create a policy and strategy for your setting using the following link: Intimate care – Support for schools and settings (devon.gov.uk)
- Do they struggle with fatigue management? It is important to teach the child/young person ways to conserve energy and pace themselves throughout the school day. It may also be necessary to provide a modified timetable and/or allow for rest breaks. The following link provides strategies to support fatigue: Managing fatigue – Support for schools and settings (devon.gov.uk)
- Are there reasonable adjustments for the child/young person? For example, physiotherapy programmes may need to be scheduled into their school timetable. Or they may have medical appointments/surgeries that take place during school hours.
- Due to the nature of MD, it can affect a child’s mental health and outlook on themselves. Does the child understand what is happening to them? Are there strategies in place to support their mental health and wellbeing?