During October, Down Syndrome Awareness Month initiatives help to shine a light on what we can do to celebrate and better support children and adults living with Down syndrome.
Every year, about 6,000 babies – one out of 700 – are born with Down syndrome in the United States. Most of these children grow up to thrive as adults. They attend school, join the workforce and contribute to their communities. But living with this lifelong condition is a long, expensive and arduous journey. It can also be a painful one – both physically and emotionally. It takes time, patience, compassion, resources and understanding as well as support from within the communities where these children live.
That’s one reason why Down Syndrome Awareness Month is so important. Spreading awareness about the reality of life with Down syndrome is the best way to educate people so they can offer that support in the most impactful ways.
Three types of Down syndrome
There are three types of Down syndrome, all of which are defined as chromosomal conditions: Trisomy 21, Translocation Down syndrome and Mosaic Down syndrome.
Trisomy 21 is the most widely known type of Down syndrome. It’s the type that 95% of people with Down syndrome have. Also, women in the U.S. usually opt to be tested for Trisomy 21 during pregnancy, as those tests are informative, yet non-invasive.
In Trisomy 21, each cell in the body has 3 separate copies of chromosome 21 instead of 2 copies. There is a small percentage of people who have Translocation Down syndrome that occurs when “an extra part or a whole extra chromosome 21 is present, but it is attached or ‘trans-located’ to a different chromosome rather than being a separate chromosome 21.” In Mosaic Down syndrome is the rarest form and can vary from child to child. Those born with this condition may have 3 copies of chromosome 21, “but other cells have the typical two copies of chromosome 21. Children with mosaic Down syndrome may have fewer features of the condition due to the presence of some (or many) cells with a typical number of chromosomes.”
Health concerns and pain issues
Some people with Down syndrome are born with birth defects or an increased risk for different types of medical conditions. The scariest and most common health risk is heart defects that are present at birth. Other common medical issues include hearing loss, obstructive sleep apnea, ear infections, eye diseases, poor muscle tone and intellectual delays.
Similar to sensory processing issues for autistic children, many people with Down syndrome have sensory pain issues. This means they can be overly sensitive to the slightest pain or they are not sensitive enough to their body’s pain messages. It may not sound like a big deal, but it is indeed cause for concern since it can pose uncertain risks.
Speaking from experience, my autistic son has a very high tolerance for pain. I remember when he was little and had a cold. I asked him several times if anything hurt, and every time he said no. When his temperature spiked, I took him to his pediatrician and she advised that he had a bad ear infection that must be very painful. My heart broke. That’s when I realized I had to be even more vigilant about his health and take more safety measures to make sure his environment was even safer.