Many of the facts people know about Down syndrome are actually stereotypes, or are “facts” based on observing the impacts of discrimination and mistreatment. Here is a list of facts that you may not know and as we confirm others we will add them here.

Facts:

Down syndrome affects people of all races and economic levels. (1)

Currently, there are 407,236 people in the United States who are living with Down syndrome. (4)

1 in 691 babies in the United States are born with Down syndrome. (4)

1 in 691 babies in the United States are born with Down syndrome. (4)

Roughly 6,000 babies with Down syndrome are born each year in the United States. (1)

Down syndrome is a chromosomal disorder resulting in three copies of the twenty-first chromosome. (4)

Down syndrome is the most common genetic disorder caused by a chromosomal abnormality. (6)

There are three types of Down syndrome; translocation, trisomy 21 and mosaic. (1)

Trisomy 21 accounts for 95% of all Down syndrome diagnosis, translocation accounts for 4% and mosaic accounts for 1%. Translocation is the only form of Down syndrome that is hereditary. (1)

Trisomy 21 is when the 21st chromosome has an extra copy and is replicated throughout every cell of the body. (10)

Mosaicism is when the the individual’s cells have a mix of 46 chromosomes and 47 chromosomes. Individuals with Mosaic Down syndrome often have fewer Down syndrome characteristics than those with Trisomy 21 and Translocation. It is also the rarest form of Down syndrome. (10)

Translocation Down syndrome has two normal copies of the 21st chromosome but also an extra (or sometimes full) copy of the 21st chromosome that will attach to another chromosome. This is the only form of Down syndrome that is hereditary. (10)

80% of children born with Down syndrome are born to women under the age of 35. This is only because fertility rates are higher in younger women. However, the chances of having a child with Down syndrome increases with the age of the mother. (1)

The life expectancy of someone with Down syndrome in 1983 was 25 years old. Today, it is 60. (1)

Down syndrome is not a disease; people with Down syndrome are not ill and do not “suffer” from the condition. (1)

Down syndrome is essentially the only trisomy compatible with life. Babies born with Trisomy 13 and 18 only have a 5% chance of surviving the first year. (3)

In 90% of Trisomy 21 cases, the additional chromosome comes from the mother’s egg rather than the father’s sperm. (2)

Down syndrome was originally described in 1866 British doctor John Langdon Down, hence the name Down syndrome. It wasn’t until 1959 that a French doctor, Jerome Lejeune, discovered it was the cause of inheriting an extra 21st chromosome. (4)

World Down syndrome day is celebrated on March 21st of every year; 3-21, because it is symbolic of three copies of the twenty-first chromosome. (7)

Individuals with Down syndrome have an increased risk for certain medical conditions including congenital heart defects, respiratory and hearing issues, thyroid problems, and certain forms of Leukemia. (1)

In 1975 the U.S. Government ruled that schools must provide an appropriate education to students with Down syndrome. (4)

Most females with Down syndrome are able to get pregnant but they are also at a higher risk for sexual abuse. (5)

An estimated 90% of parents who receive a prenatal diagnosis will choose to terminate their pregnancy in Britain. A main reason for this is the way the diagnosis is delivered by medical professionals and the incorrect information still given to parents by some medical practices. (8)

People with Down syndrome can’t be “more Downs” than another. Each person with Down syndrome has their own strengths and weaknesses just like typical individuals.

People with Down syndrome can lead happy, independent and successful lives. There are TV actors and actresses, musicians, and artists who have Down syndrome. (1)

Individuals with Down syndrome are employable; they are being hired to work in banks, corporations, nursing homes, grocery stores, hotels, restaurants and many other places. They work in clerical positions, child care, the sports field, entertainment and even within the computer industry. (1)

People first language is extremely important. Instead of saying a “Down syndrome child,” “a person with Down’s,” “Down’s kid/adult,” say “A child/individual with Down syndrome.”

Individuals with Down syndrome have an increased chance of having Alzheimer’s disease and epilepsy. (6)

67-85% of prenatally diagnosed babies with Down syndrome in the United States are aborted. This has resulted in a decrease of the population of people living with Down syndrome by 30%. (9)

The abortion rate for the United Kingdom for prenatally diagnosed babies with Down syndrome has been as high as 90%, while the abortion rate for for those in Denmark is 98%. (10)

In Iceland, 85% of women opt for prenatal testing and of those 85%, 100% of women who receive a Down syndrome prenatal diagnosis choose to abort. (9) (10)

There are approximately 40,000 individuals living with Down syndrome in the United Kingdom. (10)

Roughly 750 babies with Down syndrome are born each year in Britain. (10)

People with Down syndrome do experience cognitive delays but each individual is different. This is also not indicative of the individuals strengths or weaknesses, just as with neuro-typical individuals. (1)

Individuals with Down syndrome often face organ transplant discrimination, making it harder for the individual to be placed on an organ transplant list. (1)

There are currently only eight states in the United States that have passed a bill to prohibit organ transplant discrimination against those with disabilities; California, New Jersey, Maryland, Massachusetts, Oregon, Delaware, Kansas, and Ohio. There are two states with bills currently pending; Pennsylvania and New York. (1)

Individuals with Down syndrome can and do attend college for numerous things and graduate with degrees. (1)

People with Down syndrome are not always happy. They have feelings just like everyone else. (1)

In Europe (not including Russia), there are approximately 2,046 children with Down syndrome who have been left in an orphanage who need families and a home at any given time. (11)

In Russia there are approximately 955 children with Down syndrome who have been abandoned and need a family at any given time. (11)

In Asia, there are roughly 5,000 children with Down syndrome who have been abandoned and left in an orphanage who need a family at any given time. (11)

Characteristics of individuals with Down syndrome:

It is important to note that not all of these characteristics listed apply to every individual with Down syndrome.

Low muscle tone.

Short stature.

Epicanthal folds around the eyes.

Small airways.

Small hard and soft palate.

Single transverse palmar crease.

Larger space between the large and second toe. (6)

Brushfield spots on the eyes.

A single flexion furrow of the fifth finger. (6)

Flat nasal bridge.

May require longer to mentally process information but are still able to process and retain information.

REFERENCES

1. Down Syndrome Facts. (2019) Retrieved from https://www.ndss.org/about-down-syndrome/down-syndrome-facts/

2. What causes Down syndrome? (2017, January 31) Retrieved from https://www.nichd.nih.gov/health/topics/down/conditioninfo/causes

3. Fergus, Kathleen. (2018, December 9) 9 Rare Genetic Trisomies. Retrieved from https://www.verywellhealth.com/other-trisomies-in-humans-1120490

4. Facts and FAQ About Down Syndrome. (2018) Retrieved from https://www.globaldownsyndrome.org/about-down-syndrome/facts-about-down-syndrome/?gclid=Cj0KCQiAnNXiBRCoARIsAJe_1cq54H1C-St-JKT59fhl42BNATwn5iXSpzFk63NGkl01FRKZgnM0nigaAgkhEALw_wcB

5. Sexuality and Down Syndrome. (2019) Retrieved from https://www.ndss.org/resources/sexuality/

6. Crosta, Peter. (2017, December 6) What To Know About Down Syndrome. Retrieved from https://www.medicalnewstoday.com/articles/145554.php

7. World Down Syndrome Day. (n.d.) Retrieved from http://www.un.org/en/events/downsyndromeday/

8. FactCheck: Are 90% of babies born with Down syndrome in Britain aborted? (2018. February 3) Retrieved from https://www.thejournal.ie/factcheck-babies-abortion-3823611-Feb2018/

9. Raymer, Brittany. (2018) A World with No Down syndrome Babies? Retrieved from https://www.focusonthefamily.com/socialissues/life-issues/down-syndrome/a-world-with-no-down-syndrome-babies

10. Will, George F. (2018, March 14) The real Down syndrome problem: Accepting genocide. Retrieved from https://www.washingtonpost.com/opinions/whats-the-real-down-syndrome-problem-the-genocide/2018/03/14/3c4f8ab8-26ee-11e8-b79d-f3d931db7f68_story.html?noredirect=on&utm_term=.c8fb9c5fb564

11. Reece’s Rainbow. (2019) Retrieved from https://reecesrainbow.org/background/staggering-statistics

OTHER RESOURCES

National Down syndrome Society

Global Down syndrome Foundation

International Down syndrome Coalition

National Down syndrome Congress

National Adoption Down syndrome Network

Down syndrome Diagnosis Network

Centers for Disease Control and Prevention