Muscular Dystrophy – How To Tackle It?

By Syed Akbar
Muscular dystrophy is a crippling genetic disease. It continues to be an enigma to scientists and researchers all around the world. There is no cure as yet to muscular dystrophy. Clinically speaking, muscular dystrophy falls under the broad category of motor neuron disorders.
In patients affected with muscular dystrophy muscles stop synthesizing a particular type of protein called dystrophin. This protein is vital for all muscles to work perfectly. Unlike polio where disability stops soon after the attack, muscular dystrophy is a progressive disease crippling muscles throughout the life of the patient. Patients, if afflicted with the disease in early childhood, do not generally live beyond 25 years of age.
At present, there is no medicine to treat muscular dystrophy. It is advisable that those with the history of the disease in family should go for genetic counseling before the marriage. They may also prefer amniocentesis and go for abortion if the foetus carries the defective gene. This is the only way to avoid a muscular dystrophy patient from taking birth.
Muscular dystrophy may attack at any age. However, it generally attacks children at young age. The first symptoms of the disease include faulty gait and frequent falls. The calf muscles are bulged and the child cannot stand on its own.
The suffering caused by the disorder is considerable. First, it cause long-lasting disability, secondly there is no definitive treatment, and thirdly it may affect other family members because of its hereditary nature.
Untill a couple of decade ago virtually nothing was known about its pathogenesis. Now we know that it is a genetic disease.
In muscular dystrophy, the muscle fibres are gradually replaced by fatty tissue and the normal function of the muscle is impaired. The rate at which this happens, and therefore the rate at which weakness occurs, varies somewhat between children with the same condition. It is important to realize that some muscles are affected earlier than others, and this upsets the normal balance of strength between the muscle groups.
In children with muscular dystrophy the most frequently seen contractures occur at the ankles, knees and hips. These are partly caused by the child walking on his toes, with the knees at little bent and the feet apart, a position he adopts in order to balance in standing and walking as weakness of the hip. Knee and trunk muscles make it more difficult to keep his balance. The contractures are aggravated by the fact that children in latter stages of the condition spend more time sitting.
It is important to seek advice about physiotherapy and to start treatment aimed at preventing contractures as soon as possible after diagnosis, before there is any tightness. Do not wait untill there is an obvious deformity.
Increasing weakness makes tasks like walking and dressing more difficult but there are ways in which your child can be helped to make the most of his abilities and retain as much independence as possible, either causing distress or disrupting education or recreation.
Remember that worldwide search for a cure is on all the time, but when a therapy is found it will not make stiff or twisted joints move again. So this is another reason for trying to prevent deformities and keeping muscles supple and strong for as long as possible.
Exercises should be done regularly. It helps enormously if the exercises are done in an atmosphere of fun. They can be combined with singing, story telling and a general sense of enjoyment.
The child should not be stressed during exercises. Making the exercises into a game or having a chart of achievement might help towards a cooperative attitude.
It is important to keep a happy balance between encouragement and demand.
Praise and emphasise all the positives. Everything the child does successfully must be complimented and rewarded with a hug or on some other appropriate way.
Breathing exercises should be conducted for older children.
The child should be encouraged to attend school as long as possible. The teachers should be told about the problem in the child as their help is essential to provide the child greater and easier mobility in the school premises.