Canadian Down Syndrome Society General Information About Down Syndrome
What is Down syndrome?
Down syndrome is a naturally occurring chromosomal arrangement that has always existed and is universal across racial, gender, and socio-economic lines. One in every 781 babies born in Canada has Down syndrome. Down syndrome is associated with chromosome 21 and there are three types: Trisomy 21, Translocation, and Mosaicism.
The chance of having a baby with Down syndrome increases with the mother’s age; however, about half of babies born with Down syndrome are born to mothers under 35 years old simply because more young women are having babies.1
There are three types of Down syndrome and the type is identified from the chromosome studies done at birth to confirm the diagnosis of Down syndrome:
Trisomy 21 is the most common type of Down syndrome- it includes 95% of the Down syndrome population.
Translocation occurs in only 2-3% of those born with Down syndrome. After a child is born with translocation Down syndrome, the parents can have their chromosomes tested to see if there is a risk of future children having Down syndrome in subsequent pregnancies.
Mosaicism is the least common type of Down syndrome. In about one percent of children with Down syndrome there is an extra whole chromosome 21 in only a percentage of their body cells- the rest of the cells do not have the extra chromosome.
No matter which type of Down syndrome your child has, the effects of the extra genetic material will be unique to them. They will have their own strengths, likes, dislikes, talents, personality and temperament. Think of your baby first as a child. Down syndrome is just part of who they are.
People with Down syndrome have:
People with Down syndrome might look similar and share some common physical features, but most of all, they will look like their family members and will have their unique personality.
With appropriate medical interventions and treatment, most people with Down syndrome can have healthy lives. In 1983, people with Down syndrome only lived to about 25, now the average is 60 years old. However, as with anyone else, there is no definitive life span and some people with Down syndrome have lived well into their 70s.
Some health concerns for people with Down syndrome may include:
It is important to remember that not all people with Down syndrome will experience these health concerns. Most health issues associated with people with Down syndrome also occur in the general population and in many cases, the health conditions can be successfully treated and managed by careful monitoring.2
How to Talk About Down Syndrome
Use appropriate language when referring to any group of people. Correct terminology helps reduce prejudice, misconceptions, and stereotypes. This guide will help you when talking about Down syndrome.
It is Down syndrome
Down syndrome is named after John Langdon Down. He did not have Down syndrome, so it is not possessive (as in Down’s). Outside of North America, some countries still refer to it as Down’s syndrome.
Use Person-First Language
A person should not be defined by their disability. Emphasize the person first. For example, ‘my friend has Down syndrome’ or ‘the child has Down syndrome, NOT ‘the Down syndrome child.’
A person is not suffering from or afflicted with Down syndrome. A person has Down syndrome. People with Down syndrome can lead fulfilling lives; they can go to university, get married, and have careers.
End the R-Word
The R-word is often used in every day speech in a derogatory, offensive, and hateful way. If you stop using it, you help promote the acceptance of people with all disabilities, including Down syndrome.
CDSS Down Syndrome Answers
The best people to answer questions about Down syndrome are people with Down syndrome. In 2016, we found the most-asked questions on Google and asked 10 Canadians with Down syndrome to give their answers.
Click here to view short videos that answer some common questions
CDSS Frequently Asked Questions (FAQ’s) About Down Syndrome
We want to help you understand what Down syndrome is by providing up to date and accurate answers to frequently asked questions.
Click here to learn more
Additional General Information About Down Syndrome Resources
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 email@example.com.
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.
We greatly appreciate your generous support which enables us to continue our work. To donate, please visit our secure link at: