What is Down Syndrome?

What is Down SyndromeDown syndrome is the most common chromosomal anomaly, occurring approximately once in every 733 births. There are three major types of Down syndrome, the most common being Trisomy 21, which comprises 95% of the diagnoses. It is called Nondisjunction Trisomy 21, which means chromosome 21 did not disjoin from itself and divide evenly.

This happens at the beginning of cell division and the extra genetic material is copied in each of the cells. There is another form called Translocation Trisomy 21, where part of the number 21 chromosome breaks off and attaches itself elsewhere, sometimes to the number 14 chromosome, or sometimes to the other number 21 chromosome. The third type of Down syndrome is a rare form called Mosaicism, in which the trisomy occurs a bit later in cell division, so only some of the cells contain and perpetuate it.

The current, preferred terminology is Down syndrome. A child is a child first, so instead of a “Down’s baby,” you would say “a baby with Down syndrome”. This phrasing is called “People First” language and applies to anyone with a learning difference or a physical difference.Down syndrome is part of more than 350,000 families in the United States. It occurs in all races, and at all socioecomic levels.

National Down Syndrome Congress informational brochure

National Down Syndrome Society’s About Down Syndrome Brochure

Frequently Asked Questions

Was there something that could have been done during pregnancy that would have prevented Down syndrome?

No! Down syndrome is not caused by anything that either parent did before or during pregnancy.

What causes Down syndrome?

Down syndrome, also known as Trisomy 21, indicates an extra 21st chromosome. The error in cell division of chromosomes, called nondisjunction, occurs immediately at conception. Most people have 23 pairs of chromosomes. In a person with Down syndrome, the extra chromosome is found in all cells.

Are there different levels of Down syndrome, or ways of knowing how mild or severe it is?

Down syndrome is not an illness; having Down syndrome does not make a person sick. Either a person has Down syndrome or he or she does not.

Can a person grow out of having Down syndrome?

No, because chromosomes make up the life matter of each person, that cell structure cannot be altered (currently).

What is Down SyndromeIs there medication or drug therapy available that can reverse Down syndrome?

No. There may be other medical conditions present for a person with Down syndrome, as with any one, that may require medications.

Are there different types of Down syndrome?

Yes, because of chromosome formation, there are three (3) types:

  1. Nondisjunction Trisomy 21 – the most common type (95%); instead of two 21st chromosomes, a baby is born with three
  2. Mosaicism – the least common type (1-2%); chromosomes divide unevenly, but not until the second or third cell division after conception, so only some cells have the extra chromosome
  3. Translocation – a part of the 21st chromosome has broken off and attached itself to another chromosome, providing extra genetic material in all of a person’s cells.

Myths and Misconceptions

Myth: The condition is called Down syndrome because of the appearance of people who have it.

Truth: The condition was identified by a 19th century English physician named John Langdon Down (it was simply his last name).

Myth: Down syndrome is rare.

Truth: Down syndrome is the most common genetic condition, occurring (approximately) in one of every 800 to 1,000 births, or approximately 5,000 births per year in the United States alone. Down syndrome affects more than 350,000 people in the United States.

Myth: Old parents are the cause of Down syndrome.

Truth: No one “causes” Down syndrome. During conception, an occurrence takes place resulting in an extra 21st chromosome. 80% of children born with Down syndrome are born to women younger than 35-years; however, the incidence increases with the age of the mother.

Myth: People with Down syndrome are severely mentally impaired.

Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of cognitive delay and are definitely able to be educated.

Myth: Most people with Down syndrome live in institutions.

Truth: Today, while growing up, people with Down syndrome reside at home with their families and are active participants in educational, vocational, social and recreational community activities including sports, camping, music and art programs. Individuals with Down syndrome socialize with people with and without disabilities. Adults with Down syndrome have jobs and may live in group homes, in their own homes, and other independent housing arrangements.

Myth: Parents will not find much support as they raise their child with Down syndrome.

What is Down Syndrome?Truth: In almost every community of the United States, there are parent support groups and community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.

Truth: Children with Down syndrome are included in regular academic classrooms in schools across the country. Sometimes students are integrated into specific courses, and sometimes they are fully included in the regular classroom for all subjects. The degree of mainstreaming is based on the abilities of the individual; but the trend is for full inclusion in the social and educational life of the community.

Myth: People with Down syndrome are always happy.

Truth: People with Down syndrome have a full range of emotions just like everyone else.

Myth: Adults with Down syndrome cannot get married.

Truth: People with Down syndrome date, socialize and form ongoing relationships, and many do marry.

Myth: Down syndrome is not curable.

Truth: Research about Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

“ See my daughter first, not her disability.”

~ Parent

“I have learned more from my son than I could have ever possibly imagined.
I hope I can give him as much as he has given me as he continues to grow up.”
~Deb Balderas

 Every time the Green Bay Packers make a first down,
UnitedHealthcare will donate to Wisconsin Upside Down!
~First Downs For Down Syndrome

“Our family learns, smiles, laughs, cries and thanks God for not only opening our hearts, but opening our eyes to what the picture [life] should be.”
~Marybeth Mielke

 “Down syndrome is a gift that can’t wait to be opened.”
~Diane Moede

 “One of my greatest joys is when my 3rd grade daughter,
who has Down syndrome, reads me a bedtime story.”
~Robbin Lyons

 “Having a child with Down syndrome has introduced me to so many wonderful people and given me a new respect for the differences in all of us.”
~Amy Elfner

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