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Facts About Down Syndrome
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.

Down syndrome is the most frequent occurring chromosomal abnormality, occurring once in every 690 live births. Over 350,000 people in the United States have Down syndrome. 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).

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.

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.

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.

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.

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.

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.

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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Rocky Mountain Down Syndrome Association
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Denver, CO 80224
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