Monday Musings: An Actress with Down Syndrome is Going Viral
More with the syndrome are living longer
Monday Musings is part of the paid subscription option but is free today to mark Down Syndrome Awareness Day, which was on March 21st.
Madison Tevlin aims to breakdown stereotypes in this now viral ad.
When I studied nursing, I remember we covered topics like Down syndrome and some of the physical issues that can affect people with the syndrome. But I don’t remember ever learning to care for their different needs as they got older.
I wouldn’t be surprised if most people who hear about Down syndrome think of children with the typical facial features that many with the syndrome have. I don’t think they imagine an adult with the condition, able to live on their own and have a job.
Life expectancy has increased
In the early 1960s, children born with Down syndrome usually didn’t live to their teen years. By 2007, life expectancy rose to 47 years. Around half of those with the syndrome have congenital heart defects and other life-threatening or altering conditions. Attitudes towards treating children with Down syndrome changed though, along with advances in treatments themselves, giving them longer lives with better quality of life.
But now the medical system is facing an issue that they didn’t see before. People with Down syndrome living late into adulthood, with the associated health problems that anyone might have as they age. Life expectancy is now around 60 years.
My former foster brother, E, has Down syndrome. He joined our family when he was 3 months old. He is now in his 40s. He now lives in a group home, where he moved to when my mother died several years ago. While E didn’t have some of the more severe physical issues that some with Down syndrome have, he did have his physical struggles - some of which would likely have led to death a century ago. He has been showing signs of “accelerated aging” and Alzheimer’s disease for several years now. Interestingly, there is a connection between the two.
People with Down syndrome have an extra chromosome, the 21st chromosome. According to the Centers of Disease Control and Prevention (CDC), “Chromosome 21 plays a key role in the relationship between Down syndrome and Alzheimer’s disease as it carries a gene that produces one of the key proteins, amyloid protein, involved with changes in the brain associated with Alzheimer’s. The build-up of amyloid protein in the brain disrupts the way brain cells communicate to each other. Amyloid accumulation is seen in almost all adults over 40 with Down syndrome.”
Accumulated aging
The issue of accumulated aging, what some might call premature aging, is interesting. It seems that once people with Down syndrome get to their mid-30s, their bodies start aging faster. As they enter their 40s, they start developing diseases that those who don’t have the syndrome may only start decades later.
A study out of UCLA in 2015 found that the brains of people with Down syndrome were aging faster than usual: “The researchers showed that the biological age of brain tissue from someone with Down syndrome appeared 11 years older than the person’s chronological age. Similarly, the biological age of blood tissue was nearly five years older than the person’s chronological age.”
A more recent study, from 2023, found an even wider difference. These researchers wrote, “The study has shown that biological age of people who have DS is on average 19.1 years older than the chronologically age-matched people who don't have DS. The research has also shown that this is not caused by co-morbidities of DS, and that the premature ageing process starts very early in childhood.”
But medical care is lagging behind
Because many people with Down syndrome can seem childlike in behavior, it’s not surprising that they may be treated that way, even by healthcare professionals. Last year, NBC News ran a story about a woman in Missouri who needed help for her 26-year-old daughter, Sammee, who has Down syndrome. She had fallen and hit her head and regressed after the injury. Four months later, Sammee still had not recovered, but every physician her mother approached said that this was just because Sammee had Down syndrome and this was normal. Her mother finally found a clinic in Kansas City, Kansas, that cared for adults with the syndrome. There, the staff told her that yes, Sammee did have a traumatic head injury and they would help. Someone without Down syndrome likely would have been diagnosed and treated much more quickly.
According to the article, there are only 15 medical programs in the U.S. that are not part of a children’s hospital and accept adults for care. So who is going to care for all the adults who have special needs?
In today’s world of cutting back on services, increasing costs, and less accountability, how is anyone with any type of disability going to get the care they need? Better healthcare that leads to longer lives also leads us to people who will need more specialized care later in life. We need to do better. Sammee is a great example of how important this is.
What do you think? Leave your comments below. Let’s get a conversation started.
Marijke, I found this article to be fascinating, and disturbing at the same time. I have to admit I did not know most of the medical issues you covered that occur with DS. You are so right. We must do better. They do have special needs that need attention just like the rest of the aging population. Thank you for this education!