110 chapter 10
QUESTIONS ABOUT MUSCULAR DYSTROPHY
How common is it? It is not very common. Rehabilitation centers may see one child
with muscular dystrophy for every 30 or 40 with cerebral palsy or polio.
What causes it? Nobody knows. But in 2 out of 3 families with muscular dystrophy,
there is a history of it among male relatives of the mother. Though the parents are
usually normal, the mother carries the ‘gene’ that produces dystrophy in her sons. Her
daughters will develop normally, but they may have sons with muscular dystrophy.
What treatment is there? None. No medicines help. Special therapy or exercises will
not stop the weakness from increasing. Surgery to release tiptoe contractures is at best
of temporary benefit.
The family can, however, do much to help the child make the best of his life and
adapt to his limitations as they progress.
Also, activities, exercises and braces to
prevent contractures may help the child to keep
walking longer (see p. 111). If the child sits in a
bad position, pillows or supports to help him sit
straighter can help prevent deformities.
Is the child’s mind affected? About half of these children are somewhat mentally
slow; some are very intelligent.
What can be done? The family can do many things to help the child live more fully
and happily. The child should remain active and continue normal activities for as long
as possible. Play with other children is important. So are learning and exploring. The
child should go to school. Encourage other children to help him with learning and
play. The teacher should realize that some—but not all—children with dystrophy
learn a little more slowly than normal. Try to include the child in as many family and
community activities as possible.
The steadily increasing weakness
and the lack of effective treatment will
be hard for both the family and child to
accept. Friendly assistance, advice, and
encouragement from health workers
and friends can be a big help. Help the
family to look at the situation honestly,
and to do their best.
The goal of the family is to help
the child be as active and happy
as possible, and to adjust to his
increasing limitations.
A boy with muscular dystrophy paints the top of his
wheelchair table. Although he cannot lift his arm
without help, a simple ‘arm rocker’ made of foam
plastic lets him move it in all directions. It also allows
him to feed himself. (See p. 331.)
Disabled village Children