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, exercise
and braces to prevent contractures may help the child
to keep walking longer (see p. 125). If the child
sits in a bad position, pillows or supports to help
him sit straighter can help prevent deformities.
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Is the child's mind affected? About
half of these children are somewhat mentally retarded
(slow learners); 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.
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goal of the family is to help the child be
as active and happy as possible, and to adjust
to his increasing limitations. |
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