As we mention in our resource “Two Syndromes,” there are four main areas that we see are affecting people with Down syndrome in a positive way. The effect has been so great in some situations that families of younger people with DS cannot relate to our stories about some of our older patients. The four main areas are: expectations, life expectancy, opportunities, and goals.
The life expectancy of people with DS has increased from about 9 in 1900 to 56 in 2000 – an increase of more than 500%. To put it in perspective, the average life expectancy of people without DS in 1900 was in the mid-50s. If life expectancy had increased by the same percentage as people with DS, the average life expectancy of people without DS would now be about 300 years!
What accounts for the change? There are several factors including the ability to correct congenital heart disease (about 40% of children with DS are born with heart problems) and improved ability to treat infectious disease (people with DS have immune system defects). I also think the availability of health care to people with DS (which wasn’t always the case) has been an asset.
So besides living longer, how does increased life expectancy affect people with DS? We think much of it goes back to expectations. For example, when my great uncle Leo (who had DS) was born in 1907, why would one plan for adulthood? Prepare for a job? Make plans for when his parents were deceased? None of those were likely needs. Why plan for adulthood if there is no anticipation that a person will live into adulthood?
Living into adulthood obviously opens doors that were not previously opened for people with DS. The mere knowledge that the door could be opened to adulthood has also been a huge factor. It affects expectations. It affects the needs for opportunities and it affects goals.
There are so many new things that our patients are doing and participating in. However, if life expectancy had not increased over the last 40-50 years, there is low likelihood that there would have been much attempt to see what new things people could do. With increased life expectancy, people with DS are reaching adulthood and enjoying participating in so much more of life – and those of us without DS are enjoying being there with them.