The CDSS believes in providing as much clear and correct information about Down syndrome as possible, in order to help prevent common misconceptions or offensive language. We have compiled a list of frequently asked questions with current facts and statistics about Down syndrome.
There is no known cause for Down syndrome. Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The sole characteristic shared by all people with Down syndrome is the presence of extra genetic material associated with the 21st chromosome. This happens because of an error during cell division when the egg and sperm first meet. The effects of that extra genetic material vary greatly from individual to individual.
There are three types of Down syndrome – Trisomy 21 (the most common type of Down syndrome), Translocation, and Mosaicism.
Of the three types of Down Syndrome, only translocation can be a genetic (inherited) chromosomal arrangement.
The CDSS believes it is very important to include and celebrate people with Down syndrome and other disabilities in society. In the words of Nicholas Popowich, self-advocate and member of VATTA: “ The world needs variety in every sort of living thing. It is the same with people… I would want to say to the people: Change your definition of “normal”. Make it bigger because we all fit, we all belong, we all contribute.”
In Canada, approximately 1 in every 781 live births results in a Down syndrome determination.
There is nothing that can be done to cause or prevent becoming pregnant with a baby with Down syndrome. A baby with Down syndrome can be born to a mother of any age.
There are an estimated 45,000 Canadians with Down syndrome.
Down syndrome is not a disease, disorder, defect or medical condition and therefore does not require treatment, prevention or a cure. It is inappropriate and offensive to refer to people with Down syndrome as “afflicted with” or “suffering from” it.
The extra genetic material from Down syndrome results in a developmental disability, but is impossible to suggest the level to which this will occur. Some individuals with Down syndrome may have other disabilities, however, they are not directly linked to having Down syndrome.
“Mongoloid” is a term that is not appropriate to use when describing people with Down syndrome. It originally referred to people who resembled the ‘mongols’ but is no longer in technical/professional use.
People with Down syndrome may have an intellectual disability. However, the Down syndrome community is strongly against using the ‘r-word’ when describing people with disabilities.
From r-word.org: “When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.”
Down syndrome may be detected through prenatal testing or after birth through a blood test.
Some people with Down syndrome may share similar physical features. However, people with Down syndrome predominantly look like other members of their families.
The Down syndrome chromosomal arrangement naturally occurs universally across all racial and gender lines, and it is present in approximately one in 781 births in Canada.
John Langdon Down, a British physician, was the first person to fully describe the syndrome in 1866. It is one of the most common chromosomal abnormalities. The genetic cause of Down syndrome; an extra copy of chromosome 21; was identified by researchers in 1959.
Down syndrome is a naturally occurring chromosomal arrangement that has always existed throughout history. While art and historical pieces portraying people with Down syndrome have been found dating as far back as 500 AD, Down syndrome was first characterized in 1862 by John Langdon Down.
The treatment of people with Down syndrome has greatly improved throughout history. When CDSS began in 1987, people with Down syndrome were starting to live in their communities, and institutions were being closed. Today, with the right supports, CDSS has seen people with Down syndrome flourish in society. People with Down syndrome are contributing to their communities, living independently, getting married, and having meaningful employment.
For comprehensive information about the history of Down syndrome, we recommend reading Down’s Syndrome: The History of a Disability by David Wright. Also see the History of Down Syndrome – Human and Civil Rights Timeline.
During the COVID-19 crisis, the Canadian Down Syndrome Society is here to serve its membership, and anyone who may need access to information and resources about Down syndrome.
Although our office is temporarily closed, our team remains available to serve you via remote operations.
You can reach us toll free in Canada at 800.883.5608 or 403.270.8500, where we ask that you leave a message in our general mailbox, or with a specific team member via the staff directory. You can also reach us by email at firstname.lastname@example.org.
Please click here to visit our health resources page which now includes COVID-19 information. COVID-19 resources are also available via social media at the links below. Browse hashtag #T21COVID19 when seeking out resources that are specific to Down syndrome and COVID-19.
We wish you all well and are happy that we are able to stay in touch electronically and by phone. We encourage you to follow the advice of the Government of Canada and local health authorities to stay safe and well during these challenging times.
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