This information was taken and
adapted from Nathalie Boëls’ book: Le nanisme: Se faire une
place au soleil dans un monde de grands, Ed., CHU
We cannot prevent dwarfism, but we can
reduce the impacts it has on a person's life. From a very young age,
people with dwarfism may require different treatments to help them grow
bigger, correct certain musculoskeletal problems, maintain their
physical condition, increase their mobility, and become more autonomous
in their daily life, etc.
Growth Hormone Treatment
Produced by a small organ at the base of the
brain, growth hormones play a primary role in skeletal growth, fat and
muscle cell function, the regulation of blood sugar levels and
epiphyseal cartilage growth.
In some forms of dwarfism, growth hormone
treatment can allow a child to reach its predetermined adult height by
using that of its parents as a model – the child will not grow any
taller than this. The treatment works best on people with Turner
syndrome or hypopituitarism.
As growth hormones make the long bones grow,
they can only be used in the case of disproportionate dwarfism;
otherwise, the child will find itself with limbs too long for its trunk.
The final estimated gain is 5 – 7 cm on
average. However, this average means that some children will not grow
at all, while others will grow 10 cm more than the final predicted
height. In any case, the results may vary, not only according to the
kind of dwarfism, but also according to the child.
The hormone is injected once a day. The
treatment can last for several years without posing any risk to one’s
health. Younger children have a better chance of responding to the
treatment because their bones are less mature.
Only applicable to certain
types of disproportionate dwarfism, this treatment involves surgery, an
orthopedic fixation device, and physical therapy. While the patient is
under general anesthetic, a surgeon cuts the bone to be elongated (the
femur or the tibia) and fixes pins at both ends of the bone. The
patient then increases little by little the space between the pins,
several times a day. This allows new bone to grow and fill in the empty
space. Limb lengthening is a gradual process because the bone and
surrounding tissues need time to regrow. The blood vessels nourishing
the bone also need time to develop at the same speed as the bone.
Bones will increase, on average, by one millimeter per day until they
reach their maximum of ten centimeters. A child could add a maximum of
twenty centimeters to their original height. This maximum varies from
person to person according to their health, their bone’s original
length, and their response to the treatment. After the bone grows, it
takes one month to completely heal for every centimeter gained. It thus
takes almost thirty months to fully lengthen the legs! This may take
longer if complications arise.
Limb lengthening is not only a long process but also an extremely
painful one with little relief throughout the treatment. It is,
therefore, hardly ever used in North America on children with dwarfism.
North American orthopedic surgeons often use this technique only for
people who have different-sized legs.
Physical therapy diagnoses and treats a
variety of conditions, including those related to the musculoskeletal
system (muscles, bones, and joints) and the nervous system.
Some children with dwarfism suffer from kyphosis, hypotonia, or
hyperlaxity (see the section Problems
and Complications under Dwarfism). A physiotherapist helps
parents teach their child how to control their head and trunk, sit up
by himself, and get around from place to place. They can prescribe
exercises to strengthen the muscles of the arms, shoulders, and
shoulder blades, and maintain core strength. Exercises to stretch out
the hip flexors and lower back muscles will help correct an eventual
lordosis. A physio begins working with a child a few weeks after it is
born. They modify their method of intervention and program according to
the child’s progress as it grows.
An occupational therapist can help in
essentially two areas:
- Physically readapting a person to reach a
maximum level of autonomy in their daily activities (household chores,
personal hygiene, cooking, etc.), work, and leisure time.
- Adapting a little person’s environment
and activities to their capacities.
An occupational therapist helps parents
learn how to properly adjust the car seat and, if the child has a
pronounced hypotonia, how to position its high chair. An occupational
therapist will help someone with disproportionate dwarfism learn how to
dress themselves (put on a shirt, lace up their shoes...). They will
also evaluate their patient’s ability to cover long distances and the
possible need for a wheel chair. An occupational therapist is also a
key spokesperson when adjustments need to be made to the school, work,
or home environment.
More and more parents are taking their child
with dwarfism to see an osteopath to try to encourage their motor
development, help them regain as much freedom as possible in their
movements and ability to get around, and allow them to sit and stand up
faster. In general, adults with dwarfism go to see an osteopath to ease
pain caused by compressed nerve fibers in their lower back (see the
section Problems and
Complications under Dwarfism).
Osteopaths cannot fix some conditions
related to chronic problems. For example, they cannot cure problems
related to dwarfism such as short limbs, a disproportioned trunk, or a
smaller/larger head. Their goal is more to help people regain movement
and to relieve them of muscular tension or joint pain. To do so,
osteopaths focus on different structures of the body such as the spine,
bones, muscles, ligaments, intestines, and organs. Osteopaths can help
children with dwarfism reduce their risk of ear infections and realign
an over/under bite. In the case where the cervical nerves are
compressed, they can also reduce some of the symptoms related to
digestive problems, colic, constipation, and gastric reflux.
Little people are more frequently overweight
or obese than people of regular height. The consequences are also more
serious: additional weight on bones and joints makes walking and moving
more difficult. It can also aggravate osteoarthritis in the spine,
knees, and hips. Eating a healthy, balanced, and varied diet is
strongly recommended to reduce the risk of complications caused by
being overweight. Adults, just as much as children, need to make sure
they are getting all the essential nutrients (vitamins and minerals)
from their diet and keeping their weight down (see the section The Body under Dwarfism).
Even though little people need to be careful
while playing sports, it is equally important they exercise regularly
to strengthen their muscles and bones.
Finally, helping little people stay healthy
is also related to how they adapt to their environment – an aspect of
their health that must not be ignored. Living in a world made for “big
people” is a considerable challenge for little people. When required on
a daily basis, these physical efforts can have serious consequences on
little people: back aches, muscle pain, deformation of the spine, etc.
This is why it is so important to help them adjust to their
surroundings and for them to use technical aides to reduce their risks.
Further detailed information can be found in the section Adaptations.