For people with Down syndrome, longer life has complications
June 1st, 2008
From the New York Times:
In a cruel coincidence that scientists do not yet fully understand, research has shown that people with Down syndrome, a chromosomal abnormality, have a much higher incidence of Alzheimer’s disease at an early age. Some studies have said that 60 to 75 percent of people over age 60 with Down syndrome will have Alzheimer’s, though Dr. Ira Lott, who is in charge of the Down syndrome program at the School of Medicine at the University of California, Irvine, said those studies have been limited in scope.
So as advances in health care have extended the average life expectancy of people with Down syndrome to more than 50 years today from 25 in 1983, doctors and family members are now struggling to cope with a double dose of disability.
Scientists hope research on the link between Alzheimer’s and Down syndrome may lead to knowledge that could help prevent Alzheimer’s in the general population.
Extended feature by Sally Sara includes interviews with Gerry Thomas and his sister Beth (above).
See earlier post: Researcher Mobley offers hope to people with Down syndrome



June 2nd, 2008 at 9:47 am
This article on Down syndrome and Alzheimer’s had two messages, but I expect only one will be heard by many readers. That message concerns the early onset of Alzheimer’s in individuals with Down syndrome. More expectant mothers will receive prenatal test results for Down syndrome due to recommendations made last year. The message about a high incidence of Alzheimer’s may be seen as yet one more reason to terminate. Already, the termination rate is over 85 percent.
I wonder how those prenatal decisions would be affected if they heard the second message of the article — the one where Ms. Thomas speaks of her brother “bring[ing] great joy to my life;” of the community groups devoted to helping individuals with Down syndrome and Alzheimer’s; and of the Alzheimer’s researchers working for a treatment that may be found due to the link it has with the 21st Chromosome, of which the third copy is the genetic cause for Down syndrome.
Just as life expectancy has doubled in the past 25 years for people with Down syndrome, parents should appreciate that in the next 25 years there will likely be more treatments. It was reported earlier this year that a possible cancer treatment was derived from studying Down syndrome due to tumor growth being suppressed when the 21st Chromosome is overexpressed. Another study found a lower incidence of breast cancer in women with Down syndrome.
So, treatments may be achieved because of Down syndrome. Parents, and society in general, should appreciate this. Otherwise, at the current termination rate, while there may be treatments in 25 years, there will also be fewer individuals with Down syndrome, like my daughter Juliet, who turns 4 next month.