Be Aware of Down Syndrome

Written by P. Humbargar

Image: Rob Kay

Down syndrome is the most common of all human genetic conditions, and October is Down Syndrome Awareness Month.

Today, even when most people with Down syndrome are fully integrated into their communities, misconceptions about the condition continue to exist.

Down syndrome is more common than many people probably realize. In the United States, approximately 400,000 people have Down syndrome, and 1 in every 691 babies is born with the condition.

Down syndrome occurs when a person has an extra portion of chromosome 21 present. This extra genetic material causes the characteristics associated with the syndrome.

The condition is usually identified at birth, although it is increasingly being diagnosed prenatally. Babies born with the condition usually have certain distinctive traits, including low muscle tone, a deep crease across the palm, a flattened facial profile, and an upward slant to the eyes. These traits do not necessarily appear in every baby born with the condition and can occur in the general population as well, so a test is needed for a definitive diagnosis.

All people with Down syndrome have varying degrees of cognitive delays, but the majority of delays are mild to moderate. People with Down syndrome also have an increased risk for many medical conditions, including congenital heart defects, respiratory problems, and thyroid conditions.

Down syndrome occurs in people of all races and economic levels, and the incidence of its occurrence increases as a woman ages. At age 20, the incidence of a mother having a baby with Down syndrome is 1 in 2,000; at age 40 it is 1 in 100; and at age 49, the incidence is 1 in 10. The reason for the link between the syndrome and maternal age is as yet unknown.

Up until the inclusion movement which began in the early 1960s, people with Down syndrome were generally excluded from society and housed in institutions. Their life expectancy was very low, and they often died in childhood, as their associated medical problems often went untreated. They were incorrectly referred to as “mongoloids” or “mongoloid idiots,” terms now considered derogatory and no longer in common use. In many states, they, along with other people with cognitive delays, were regularly forced to undergo forced sterilization.

Times have fortunately changed dramatically for individuals with Down syndrome over the past 50 years!

Today, most people with Down syndrome live at home with their families and are increasingly seen as valued members of their communities. Children with the condition are integrated into regular education systems and compete in sports and other activities. They graduate from high school, often with regular diplomas, and in some cases, attend college and even earn degrees. They are employed in a variety of positions, have meaningful interpersonal relationships, and even marry.

Additionally, medical advances have greatly increased the life expectancy of people with Down syndrome; and now, 80% will reach the age of 60 or beyond. Researchers are confident that in the future it will be possible to improve, correct, or prevent problems associated with Down syndrome.

There are also parent support groups in almost every community and organizations, from the local to the national level, that provide services to families and advocate for children with Down syndrome.

It is important to know that there is a preferred language to use when referring to Down syndrome. According to one of the largest Down syndrome advocacy groups, the National Down Syndrome Society, people with Down syndrome should always be referred to as people first. Use the phrase “a child with Down syndrome,” and avoid saying “a Down syndrome child” or “he has Down’s.” Down syndrome is a condition not a disease. People have the condition; they do not “suffer from” it and aren’t “afflicted by” it. And do not use the term “mental retardation,” as the term can be hurtful and suggests that the person is incompetent. Instead, use “intellectual or cognitive disability.” And the preferred spelling is Down syndrome, rather than Down’s syndrome.

People with Down syndrome are more like people who do not have the condition, than they are different. They have similar hopes and aspirations, and there is much they are able to achieve when the focus is on their abilities and not their limitations.

Melissa Riggio (1998-2008), a young woman with Down syndrome, explained this so well in an inspiring article she wrote for National Geographic Kids Magazine. In her article, Melissa shared her thoughts and dreams and explained what having Down syndrome meant to her:

I can’t change that I have Down syndrome, but one thing I would change is how people think of me. I’d tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend.

After all, I would do the same for you.

To read Melissa’s entire article, please click here.


One comment

  1. David Postma

    i always think that somehow someday, there will be a genetic cure for downs syndrome.*

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