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What is Down syndrome?

Contributed by The Canadian Down Syndrome Society
Friday, 19 June 2009

Dear Parents:

We understand the mixed emotions you may be feeling at this time. We would like to share our experiences with you. We hope you will find them useful.

We realize that each story is as unique as each child and family; however, we hope it will become apparent how precious our children are to us and how proud we are of them.

We invite you to join the circle and get to know us! With our very best wishes for you and your baby...

We can mail you a New Parents Package. Contact us at 1-800-883-5608 to order a package.

Down syndrome, redefined

Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is present in approximately one in 781 births in Canada.

Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as "afflicted with" or "suffering from" it. Down syndrome itself does not require either treatment or prevention.

The sole characteristic shared by all persons with Down syndrome is the presence of extra genetic material associated with the 21st chromosome. The effects of that extra genetic material vary greatly from individual to individual. Persons with Down syndrome karyotypes may be predisposed to certain illnesses and medical conditions, but that genetic arrangement does not guarantee their development. The same illnesses and conditions are also present in the general population. Timely and accurate diagnosis and appropriate treatment of these illnesses and conditions improves both the length and quality of life, to the same extent as would be expected in the population without Down syndrome. Vigilance on the part of health care practitioners is required to identify and treat any of them if they arise.

Conversely, studies have shown that people with Down syndrome have a statistically lower risk of developing certain other illnesses and medical conditions. That genetic arrangement does not guarantee that they will not develop.

Down syndrome commonly results in an effect on learning style, although the differences are highly variable and individualistic, just as in the physical characteristics or health concerns. The most significant challenge is to find the most effective, productive methods of teaching each individual. The identification of the best methods of teaching each particular child ideally begins soon after birth, through early intervention programs.

Position Statement on Redefining Down Syndrome
Approved November 2003

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