| Facts
About Down Syndrome |
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People
with Down syndrome want to be accepted. They want to be included.
They wish to be provided with choices and opportunities. People
with Down syndrome have goals and dreams. They want to be heard
and given the same respect as everyone else. Individuals with Down
syndrome are thinking and feeling people, and they want to be treated
as such. They want the same quality of life as everyone else. |
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People
with Down syndrome are active participants in the community; schools,
jobs and leisure activities. Some live with family, some with friends,
and some independently. |
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At
the beginning of the 20th century, there were close to 100,000
children in institutions – many of those were children with
Down syndrome with a dismal existence and a life expectancy of
9 years. The gains made in the last third of the century in education,
employment, and community living can, and must be, further broadened.
The new century offers the possibility of unparalleled opportunities
for individuals with Down syndrome. Life expectancy for a baby
born today with Down syndrome is 55-60 years. |
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Down
syndrome is a genetic condition, resulting when a baby is born
with three, rather than the usual two, copies of chromosome 21.
Because there are three copies of chromosome 21, Down syndrome
is also called trisomy 21. With the third 21st chromosome existing
in every cell, it is not surprising to find that every system in
the body is affected in some way. Although, not every person with
Down syndrome has the same problems or associated conditions. |
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Down
syndrome is the most frequent occurring chromosomal abnormality,
occurring once in every 733 live births. Over 350,000 people in
the United States have Down syndrome. |
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While
the age of the mother can be a factor, 80% of children with Down
syndrome are born to parents under the age of 35 (the average age
is 26). |
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When
a child with Down syndrome is born, many people – from experts
to family members – will tell parents they "know" what
the child will accomplish. While there are guidelines regarding
physical and cognitive development, it is impossible to predict
the future of a child with Down syndrome – just as it is
for any other child. No professional can look at a child and tell
you how intelligent, successful or independent he or she will be
in 20, 30 or 50 years. |
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Some of the medical problems associated with Down syndrome:
- Between
40 to 60% of all infants with Down syndrome have some type of
heart defect.
- Hypotonia
(low muscle tone) is another common feature, which is the cause
of not only delayed gross motor development like crawling and
walking, but also constipation and gastroesophageal reflux.
- Seizures
occur in 5 to 10% of people with Down syndrome.
- Those
with Down syndrome are at greater risk for leukemia, sleep apnea,
hypothyroidism, celiac disease and diabetes.
- The
prevalence of autism or autistic spectrum disorders is estimated
to be between 5 and 7%.
- Atlantoaxial
instability (AAI), which is caused by excess movement between
the first and second vertebrae in the neck, occurs in approximately
15% of youths and causes a potential risk of spinal cord damage.
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This
is the first generation of individuals with Down syndrome to age.
Many health care professionals are just beginning to understand
what is "normal" aging and what may be certain conditions
specific to Down syndrome. For example, there has been a tendency
to over-diagnose Alzheimer's disease in those with Down syndrome
because there is a close connection. Yet only 20 to 25% of all
adults with Down syndrome show any of the dementia or cognitive
decline that is the hallmark of Alzheimer's disease. |
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Research
in Down syndrome is funded at an extremely low level compared to
other disabilities. We must continue to increase funding since
the key to also unlocking the problems associated with Down syndrome
lies on the 21st chromosome. For example, current researchers say
that raising the IQ points of an individual with Down syndrome
by 20 points is not out of the question. |
