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DMD weakens muscles in the entire body, so it can have very wide-ranging effects. This makes people with the disorder more susceptible to a host of complications.
The best way to manage DMD is to try a combination of treatments and a team of specialist doctors, nurses, and other healthcare professionals.
Because DMD causes the muscles in the body to become weak and damaged, maintaining muscle strength and function is a key part of care.
Physiotherapists, occupational therapists and other rehabilitation specialists play a major role in the care of people with DMD. They work with patients to stretch out their muscles and keep their joints as flexible as possible.
As DMD progresses, a scooter, stroller or wheelchair may be needed to help your child get around and be more independent.
Because DMD affects the muscles that help control eating, swallowing and digestion, people with DMD often experience constipation and gastroesophageal reflux, as well as difficulty in chewing and swallowing.
A healthy diet, and maintaining a healthy weight, are especially important for people with DMD. A dietitian can help make sure that your child gets a well-balanced diet and the right amount of nutrients, supplements, and fluids. A gastroenterologist—a doctor who specialized in the digestive system—will also be able to help with any digestive problems.
People with DMD often develop a condition called osteoporosis. This makes the bones fragile and more likely to break. As back muscles become weaker, the spine may also begin to curve – a condition called scoliosis.
Radiographs or X-rays are used to detect bone weakness (early detection is better), and medication may be used to treat osteoporosis. Your doctor might suggest surgery or casting c in the case of broken bones (fractures) or scoliosis.
DMD also affects the muscles used for breathing. As the disease progresses, these muscles get weaker and people with DMD can develop a cough and/or have trouble breathing.
Breathing problems can be reduced by various machines that help the lungs to breathe (ventilators) and cough (cough assist machines). Your doctor will be able to suggest which machines you should consider, and when they might be most useful.
The heart is a muscle, and DMD can affect it, too. So your doctor will want to check your child’s heart often—and consult with a heart specialist (known as a cardiologist).
The cardiologist may suggest using medication if your child has a condition called cardiomyopathy—heart muscle damage. If your child’s heart muscle is relatively healthy, doctors might prescribe medicine to help reduce future damage.
Problems with learning, speech and behavior are more common in people with DMD. No one really knows why. (Although the DMD protein, dystrophin, has been found in the brain and scientists think they might be connected to learning, speech, and behavior issues in DMD).
Mental health professionals will be able to provide support, depending on your child’s individual needs. Schools will also be able to adapt to both physical and learning needs.
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Date of preparation: September 2022
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Neuromuscular disorders affect the muscles and nerves, and most of the causes are genetic. This means they are either passed down through the family or caused by changes in an individual person’s genes.
Most neuromuscular disorders cause muscle weakness that worsens over time. Signs and symptoms of neuromuscular diseases can vary and may be mild, moderate, or severe.
Most often, when a child has a neuromuscular disease, they don’t grow and develop as fast as other children their age. They are often slow to start lifting their head, sitting, walking, and talking.
Treatment and supportive care may improve the symptoms of a neuromuscular disorder, increasing mobility and even life expectancy.
Muscular dystrophy is the term for a group of neuromuscular disorders that cause muscle weakness and muscle loss.
Duchenne muscular dystrophy (DMD) is a type of muscular dystrophy that causes muscle weakness that worsens over time. The progression and symptoms can vary from person to person.
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