IBAN: IT36M0708677020000000008016 - BIC/SWIFT:
ICRAITRRU60 - VALERIO DI STEFANO or
112 chapter 10
Other problems
• Getting fat is a common problem in children with dystrophy. The child needs to
eat a healthy balanced diet. But take care not to let him eat too much—especially
sweet things. Extra body weight will make walking, breathing, and other activities
more difficult for his weakening body, and will make it harder for family members
to lift him.
• Constipation (hard, difficult stools) may become a problem. Drinking lots of
liquid helps. So does eating fruits and vegetables, and foods with lots of fiber
(see p. 212).
• Spinal curve can become severe (see picture of Tito drawing, below). A corset or
body brace may help hold the child in a straighter position so he can use his arms
better and breathe better (see p. 164).
• Arm weakness in time may become a problem for self-care and eating.
You can make a simple aid to help get the
hand to the mouth. More ideas of aids for
eating and reaching are on p. 330 and 331.
CAUTION: If elbow contractures develop, it is
probably better to leave them, as a bent elbow is
more useful than a stiff, straight one. (See p. 122.)
pin to let
it tip up
and down
bamboo
post put
into holes
in base
heavy wood base
It is important to help the child gain interests and skills that he can continue to
develop even as he becomes very weak. He should stay in school, if possible, even
when he has to go in a wheelchair.
Learning to draw and paint can be fulfilling. In Los
Pargos, an organization of families of disabled children
in Mexico (see p. 517), 4 brothers with muscular
dystrophy have all become very good artists. Their
paintings have won prizes in contests and are sold to
raise money for the group. The best artist of all was the
oldest brother, Tito. He took pride in his paintings and
enjoyed teaching the other children. He did one of his
best paintings, a sea turtle with wings, a week before
he died, at age 17.
PREVENTION: The only way to prevent muscular
Even when he was so weak he could
barely move, Tito continued to
dystrophy is for women who may have the dystrophy
create beautiful pictures.
gene not to have children. This mostly means sisters of
affected boys and close relatives on the mother’s side. Tests to find out if you have the
‘gene’ that causes muscular dystrophy may be available, but are expensive. If you have
one son with dystrophy, other sons will be likely to have it too.
OTHER MUSCULAR DYSTROPHIES AND MUSCULAR ATROPHIES
The type of dystrophy just described—also called progressive, pseudohypertrophic,
or Duchenne’s muscular dystrophy—is the most common. But there are many different
types of muscular dystrophy and muscular atrophy. All start little by little: some in early
childhood, some between ages 13 to 19, and some in adults. All steadily get worse and
worse. Some types, however, almost stop after a certain age, and the person may live
to active old age, although handicapped.
Disabled village Children
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