When my daughter was born with Down syndrome 11 years ago, I was told by my doctor that she probably wouldn’t live until 3 years old. Beyond that, I was terrified that she would be ostracized or abused by society. Through parenting my brilliant daughter, my fear turned into amazement – amazement at all she could do.
There are so many myths, misconceptions and outdated information out there, I wanted to write and let people know a few truths during this, National Down Syndrome Awareness Month.
In fact, we, at the Global Down Syndrome Foundation, talk about the Two Syndromes, because Down syndrome in the United States today compared to just 30 years ago is almost a completely different condition.
1. Why are people born with Down syndrome? Down syndrome has nothing to do with race, nationality, socioeconomic status, religion, or anything the mother or father did before or during pregnancy. Down syndrome, also known as Trisomy 21, is a condition where a person is born with three copies of chromosome 21 instead of two. Why some babies are born with that extra chromosome is largely unknown. We do know the chances of having a baby with Down syndrome increases significantly with the mother’s age; however, 80% of babies born with Down syndrome are born to mothers under 35 years old because more younger women are having babies.
2. The lifespan of people with Down syndrome has more than doubled in recent decades. In the 1980s, the average lifespan of a person with Down syndrome was 25 years old. Today the average lifespan of a person with Down syndrome is nearly 60 years old.
People with Down syndrome in our country used to be housed in inhumane institutions, which were eventually (in the not too distant past) dismantled. Many of these institutions provided little or no access to any kind of medical care and in some cases there was not even plumbing. American civil rights activists led by then President John F. Kennedy worked so that children with Down syndrome and other developmental disabilities could stay with their families, be included in school and have access to medical care. (Learn more about the human and civil rights of people with Down syndrome.)
3. Despite being the most frequent chromosomal disorder in the United States, Down syndrome is one of the least funded conditions. With research funding we can have improved medical outcomes and quality of life. If individuals with Down syndrome have a baseline of health, then they will be able to learn at school, be able to improve cognitively and be fuller members of society. Although Down syndrome is the leading cause of developmental delay in the United States affecting one in every 691 babies born, it is one of the least funded genetic conditions by our National Institutes of Health (NIH). The Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD) at the NIH is trying to change that and has established a Down syndrome registry called DS-Connect. If you have a family member or friend with Down syndrome, they can sign up.
4. There are challenges (and opportunities) for people with Down syndrome, including a higher incidence of Alzheimer’s disease. Global has established an Alzheimer’s disease research and medical center with a subspecialty in Down syndrome at the Crnic Institute on the Anschutz Medical Campus. This is because Alzheimer’s disease and Down syndrome are two sides of the same coin. People with Alzheimer’s disease have three copies of the amyloid precursor protein gene (APP). This gene resides on chromosome 21. People with Down syndrome have three copies of chromosome 21 and therefore three copies of APP. Sadly, it is estimated that 50 percent of people with Down syndrome will get the dementia associated with early onset of Alzheimer’s. However, why 50 percent don’t get dementia could provide the key to new therapies or even a cure for Alzheimer’s. This would clearly help tens of millions of people in both populations. Recently the National Institute on Aging (NIA) and the NICHD announced a $5 million funding opportunity for researchers studying the connection between Alzheimer’s and Down syndrome called Biomarkers of Alzheimer’s Disease in Down Syndrome.
5. People with Down syndrome have so much potential. At Global we believe in the Nine Intelligences and people with Down syndrome have clear strengths in many of those nine, including social-emotional intelligence. From birth to 5 years old, many children in the United States can access resources for physical therapy, speech therapy, education strategies and more. This “early intervention” is important for children with Down syndrome to reach their potential. Although more research needs to be done, generally speaking people with Down syndrome are strong visual learners. Reading is often a strength, and as adults, there are quite a few who are very accomplished in the visual and performing arts. Famous TV and film actors who have Down syndrome include Lauren Potter, Chris Burke, Luke Zimmerman, Jamie Brewer, Connor Long and Pablo Pineda.
There is still so much discrimination against people with Down syndrome. All parents want their children to reach their potential. People with Down syndrome cannot reach their potential without increased funds in research and medical care and everyone can help advocate for that.