Photo Credit: Lisa Lewis, American Sweetheart Photography
It’s World Down Syndrome Day! Now, more than ever, there is so much to be grateful for in the Down syndrome community! We have seen beneficial medical advances, integration in schools and the work force and inclusion in mainstream media. 2016 held a lot of “firsts” for us and I am hoping to see this trend continue into 2017. To keep up this pace, we are going to have to continue to educate and advocate for the Down syndrome community.
Many people have said to me “Things are so much better now for people with Down syndrome than it was ten years ago.” The harsh reality is that people in our community fought for future generations, made sacrifices that we are benefiting from today. And there is still so much work for us to do. We need to continue advocating for a better, healthier future.
We have seen major strides in life expectancy for people with Down syndrome. In the early 1900s, children born with Down syndrome rarely lives beyond 9 years old. In 1983, the average life expectancy of a person with Down syndrome was 25 years. Today, people with Down syndrome are living into their 60s and 70s.
The medical breakthroughs that have helped advance life expectancy happened because scientists were able to receive funding and could recruit volunteers. Community members enrolled in clinical trials to help scientists connect the dots that led to these breakthroughs.
Studies have been done on autopsies of people with Down syndrome and we learned they have a greater risk for early onset Alzheimer’s than those without. That research showed that by age 40, almost all people with Down syndrome have evidence of Alzheimer’s disease.
So let’s do the math. I was 32 when I had Elisa. Ethan was 4. If she develops Alzheimer’s at 40, I will be 72. Ethan will be 44. We have been through a lot as a family, but I am not prepared to lose my daughter to Alzheimer’s.
I don’t have to. But I need your help.
Right now, there are dozens of clinical trials going on across the United States. Scientists have received grants to study diseases that disproportionally effect people with Down syndrome. They want to determine the “why?” and “how?” so they can provide treatment options and cures. These breakthroughs often lead to advancements that benefit the general population. In order to get these answers and improve quality of life, they need to recruit volunteers. Volunteers are usually compensated for time and travel. Some studies involve simply reviewing medical information or keeping a log of behaviors. Others involve trialing potential new medications.
I had the opportunity to hear from one of these scientists at a lecture last year. Dr. Alberto Costa is a researcher at Case Western Reserve University who is studying cognitive function in people with Down syndrome. He is also the father of a daughter with Down syndrome. Dr. Costa’s latest trial has potential to make major breakthroughs- but he needs additional volunteers to participate.
We could have a discovery on the horizon that could allow our children to have increased cognition and prevent or delay the onset of Alzheimer’s. We just need more people to participate in order to investigate the possibility.
Dr. Costa is one of dozens of researchers trying to make a difference and searching for people to help. Consider being a part of a clinical trial to improve the quality of life for our community. The families that came before us participated in these studies in order to make a difference for future generations of people with Down syndrome and their families. Be part of the change and make healthier, longer lives possible for people with Down syndrome.