Shining a Spotlight on Down Syndrome Through Education, Advocacy, and Research

Down syndrome is a genetic disorder that results from a chromosomal arrangement. People with Down syndrome have an extra partial or whole copy of chromosome 21. While the causes are unknown, Down syndrome is a universal part of the human condition, regardless of race, gender, or socioeconomic status. It is the most common chromosomal disorder, present in roughly 1 in every 700 babies born in the United States. Worldwide, Down syndrome accounts for somewhere between 1 in 1,000 and 1 in 1,100 live births, representing roughly 3,000 to 5,000 children born with Down syndrome each year.

Key Highlights

Learn the facts about Down syndrome, advocacy and research for this condition, and the neurodiversity movement.

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PRA Health Sciences

World Down Syndrome Day has been officially observed by the United Nations since 2012. The day represents a call for both organizations and individuals to raise public awareness of Down syndrome, also known as Trisomy 21. The goal of the 2021 World Down Syndrome Day observation on March 21 is to connect: by shining a spotlight on the Down syndrome community, World Down Syndrome Day gives all people with Down syndrome a chance to “connect and participate on an equal basis with others.”

Fact Versus Fiction

Despite Down syndrome being common, numerous myths persist about the condition. One common misconception is that people with Down syndrome don’t live very long. However, the truth is that with the appropriate medical care and attention, people with Down syndrome can live a long and healthy life. Another persistent myth is that people with Down syndrome cannot achieve “normal” life goals. Putting aside the fact that the so-called “normal” is different for everyone, when many people with Down syndrome receive the right support, they can walk, talk, attend mainstream schools, and live “full, semi-independent adult lives”—just like anyone else.

People with Down syndrome have the same needs as all other people. According to Down Syndrome International, the one constant is that every child with Down syndrome will experience some level of learning disability. Children with Down syndrome typically take longer to reach specific developmental milestones and generally require some additional support. However, the way the condition affects a person’s health, learning, and development is individualized and highly variable. Lifetime support needs will also differ.

People with Down syndrome experience developmental delays that vary across the areas of motor, social, communication, cognition, and self-help. To provide the right educational resources for people with Down syndrome, it’s important to recognize the strengths, such as strong visual awareness, the ability to learn and use signs and gestures, the written word, enthusiasm to communicate and socialize with others, the use of behavior and attitude modeling from peers and adults, and the importance of structure and routine.

Groups like the National Down Syndrome Society advocate for the inclusion of children with Down syndrome in mainstream education settings. These inclusive environments, they say, foster collaboration between teachers, staff, therapists, and students, improving learning for everyone. Inclusion also fosters understanding and empathy and prepares children with Down syndrome for success as adults.

Employment Advocacy

Down syndrome and other advocacy organizations work hard to facilitate employment for people with Down syndrome. In addition to providing an income, employment leads to an enhanced quality of life and provides a sense of identity, contribution, and belonging. From a business perspective, research has demonstrated that employees with Down syndrome have an overall positive impact on both colleagues and the work environment. Organizations like Down Syndrome International are hard at work to break the stereotypes and assumptions that may inhibit people with Down syndrome from being employed.

Researching to Improve Lives

Current research about Down syndrome focuses primarily on therapy, management, and mitigating future health conditions of people with Down syndrome. Recent research, in particular, has focused on Alzheimer’s disease, a condition that affects people with Down syndrome at a much higher rate compared with the general population.

The National Institutes of Health’s Eunice Kennedy Shriver National Institute of Child Health and Human Development has supported research on such topics, including the INCLUDE project, which aims to clarify and understand the “critical health and quality of life needs” of people with Down syndrome. Researchers hope to further scientific discoveries that will ultimately improve the health, well-being, and neurodevelopment of people with Down syndrome.

Another organization—the Trisomy 21 Research Society—is the first nonprofit, international scientific organization that studies Down syndrome. This organization aims to promote both basic science and applied Down syndrome research, stimulate translational research, and use new scientific knowledge to improve people’s quality of life.

The Neurodiversity Movement

Neurodiversity is normal. By definition, it’s simply the idea that neurological differences are natural forms of human diversity. Neurodiversity celebrates our differences. For Down syndrome, the neurodiversity movement has shifted the popular understanding of Down syndrome as a difference, rather than something that’s debilitating.

Celebrating neurodiversity has been associated with demonstrated improvements in self-esteem, motivation, and resilience. A mainstream understanding of neurodiversity has also reduced the stigma around differences in learning, thinking, and processing that people with Down syndrome experience.

World Down Syndrome Day celebrates the differences of people with Down syndrome, elevating the voices of the community and encouraging education and understanding from everyone else.

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Learn about how PRA is fighting against Alzheimer’s disease.

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