Muscular dystrophy is a group of inherited diseases that cause progressive muscle weakness and loss of muscle tissue. The most common type of muscular dystrophy in children affects the skeletal muscles, which are responsible for movement. As the disease progresses, these muscles become weaker and eventually stop working altogether. This can lead to disability and even death if left untreated.
Signs and symptoms of muscular dystrophy vary depending on the type, but typically include muscle weakness, stiffness, joint contracture and wasting. Other associated problems can include difficulty with balance and coordination, scoliosis (curvature of the spine), breathing difficulties due to weak respiratory muscles, fatigue and swallowing difficulties.
Muscular dystrophy is typically diagnosed with a physical examination, family history and genetic testing. Electromyography (EMG) can also be used to measure the electrical activity of muscles, helping to diagnose myopathy or other muscle disorders. X-rays, MRI scans and blood tests may also be performed in order to get a better understanding of the condition.
Muscular dystrophy is caused by a genetic mutation that affects the production of proteins necessary for muscle function. This can be inherited from either parent or occur spontaneously as a result of environmental factors, such as radiation exposure.
Treatment and therapy for muscular dystrophy in Australia vary depending on the type of condition, but can include physical therapy to help maintain muscle strength and flexibility, occupational therapy to improve daily living skills, medications to manage pain or fatigue, assistive devices such as wheelchairs or braces and nutritional supplements. Surgery may also be recommended in some cases. In addition, counselling and psychological support can help children and families to cope with the condition.
Occupational therapy for children with muscular dystrophy focuses on providing support and assistance in the areas of daily living skills, such as dressing, grooming, eating and mobility. It also helps to develop problem-solving strategies for dealing with tasks that are difficult due to muscle weakness or fatigue. Occupational therapists can provide specialised equipment which may help to improve independence, as well as provide advice and education on how to use it safely and effectively.
Physiotherapy for children with muscular dystrophy focuses on maintaining muscle strength and flexibility, as well as improving coordination, balance and posture. This may include exercises to stretch muscles, strengthen weak areas and improve range of motion. Physiotherapists can also provide advice on how to use assistive devices such as wheelchairs or braces safely and effectively, as well as advice on how to participate in physical activities.
Psychological therapy for children with muscular dystrophy can help to build confidence and resilience, as well as provide support and coping strategies for dealing with the associated physical, emotional and social challenges. Psychological therapies such as cognitive behavioural therapy (CBT) may also be used to help manage any anxiety or depression which may occur due to the condition.
In Australia, financial support is available for children with muscular dystrophy through the National Disability Insurance Scheme (NDIS). The NDIS provides funding for a range of services and supports, such as therapy and equipment. In addition, parents may be eligible to receive government payments such as Carer Allowance or Carer Payment. Families may also be eligible for the Child Disability Assistance Payment.
Looking after yourself and your family when living with muscular dystrophy can be challenging, so it is important to take steps to ensure that you are looking after yourselves in the best way possible. It is important to get enough rest and eat a healthy diet, as well as taking time out for leisure activities or hobbies which provide physical and mental benefits. It is also important to ensure that you are getting enough social and emotional support, whether it be from family and friends or through support groups. Finally, it is important to stay informed about the latest treatments and therapies available for muscular dystrophy in order to get the best possible care.
