Down syndrome (Trisomy 21) is a chromosomal disorder due to 3 copies of chromosome 21, causing a number of developmental delays, medical and physical disabilities. Learning is one of the areas that is affected by the disorder. Children born with Down syndrome typically have delays in the area of gross and fine motor skills, thinking, short attention span, speech and language difficulties and sequencing.
Awareness Day: March 21
Awareness Month: October
Ribbon: Blue and Yellow
- There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%
- Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year
- Down syndrome occurs in people of all races and economic levels
- The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age
- People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
- A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
- Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
- People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
- All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses
The incidence of Down syndrome is between I in 1000 to 1 in 1,100 live birth worldwide.
- Each year, approximately 3,000 to 5,000 children are born with Down syndrome.
- 60-80% of children with Down syndrome having hearing issues
- 40-45% of children with Down syndrome have congenital heart disease
- The life expectancy increased slowly from 1900 to 1960 (by 89%) but rapidly grew from 1960 to 2007 (456%)
Life Expectancy by Race
- Whites with Down syndrome in the United States had a median death at the age of 50 in 1997 compared to 25 years for African Americans and 11 for people of other races
Down Syndrome Timeline
1866- British Physician John Langdon Down, first described the genetic disorder as “Mongoloid” based on patients similar characteristics.
1876- An initial association between premature “senility” and Down syndrome is discovered.
1929- Life expectancy is approximately 9 years of age
1932- Abnormal distribution of chromosomes was first suggested as the cause of Down syndrome.
1946- Life expectancy is approximately 12 years of age.
1948- Evidence between Alzheimer’s and Down syndrome is first published.
1959- Dr. Jerome Lejeune discovered Down syndrome is the result of an abnormality in the chromosomes.
1959- The term Trisomy 21 is used on the medical community to describe Down syndrome.
1960- Researchers discover a type of trisomy called translocation
1961- Researchers discover a type pf trisomy called Mosaicism.
1965- The World Health Organization (WHO) accepts the name Down syndrome as the standard name to use.
1970- Life expectancy is approximately 25 years of age.
1976- Amniocentesis comes into common use in the United States
1987- A gene associated with Alzheimer disease is discovered on Chromosome 21
1994- CDC announces he prevalence of Down syndrome from 1893-1990 was 1 in 1087.
1997- Life expectancy is approximately 49 years of age.
2006- Life expectancy is approximately 60 years of age
Band of Angels: http://www.bandofangels.com/-
Established in 1994, Band of Angels provides support for individuals with Down Syndrome and their families. The website offers links on Down Syndrome support groups and a litany of topics including, adoption, autism and education.
Down Syndrome International https://www.ds-int.org/
A U.K. based international organization comprising a membership of individuals and organizations from all over the world. Disseminates information on Down Syndrome including prenatal diagnosis, early intervention, education, medical, health, employment, aging and human rights. Down Syndrome International also promoted World Down Syndrome Day (March 21) as a day dedicated to people with Down Syndrome.
Global Down Syndrome http://www.globaldownsyndrome.org/
Provides fundraising, education and governmental advocacy for the Linda Crnic Institute for Down Syndrome. Resources available on the website include, information on research, medical care and facts on Down Syndrome.
International Down Syndrome Coalition: http://theidsc.org/
Dedicated to helping and advocating for individuals with Down syndrome from conception and throughout life. Offers support to parents who are new to the Down syndrome diagnosis by connecting parents to each other.
National Association for Down Syndrome http://www.nads.org/
NADS is the oldest organization in the United States serving individuals with Down syndrome and their families. Also provides families with information and resources that will enable them to access appropriate services and educates the public about Down syndrome.
National Down Syndrome Congress http://www.ndsccenter.org/
The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.
National Down Syndrome Society http://www.ndss.org/
NDSS provides resources to new and expectant parents and offers a toll-free helpline and email services. NDSS also focuses on transitions , wellness and education