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 (https://www.ndsccenter.org/wp-content/uploads/2017-PTP-Eng.pdf).

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…, where an extra part or whole extra copy of chromosome 21 is attached to a different chromosome.

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:

Some intellectual disability

Some delay in development which may include delays in speech development and motor skills

Some characteristic physical features, including a recognizable facial appearance and short stature

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:

Congenital heart conditions

Gastrointestinal issues

Increased risk of developing childhood leukemia

Respiratory infections

Sleep issues

Thyroid problems

Vision and hearing problems

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.
(http://www.downsyndrome.org.au/documents/resources/prenatal/DSA_AGuideForExpectantParents_Resource.pdf)

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.

“Let’s Talk About Down Syndrome” Informational poster

ENGLISH Download

FRENCH Download

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.’

Be Positive

e. 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.

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.