People With Down syndrome Living Much Longer – Unless They’re Not White

The Road We've Shared celebrates all adult lives with Down syndrome

Change.org Petition

Today we posted a petition to gather support for advocacy around an important issue –  here’s why.

The Research

Back in March, and again in July, I wrote about a discrepancy that I found unacceptable and frightening.

Median age at death of persons with Down syndrome by race

Yang, Quanhe, Sonja A. Rasmussen, and Jm Friedman. “Mortality Associated with Down’s Syndrome in the USA from 1983 to 1997: A Population-based Study.” The Lancet 359.9311 (2002): 1019-025.

According to a study published in 2002, the life expectancy for white people who have Down syndrome is at least twice that for people of color who have Down syndrome.

No information was given as to possible causes for this discrepancy but researchers determined that further study is warranted.

Identification of factors responsible for the racial differences recorded could facilitate further improvement in survival of people with Down’s syndrome.  (From research study)

Differences among racial groups in general, and the heart defects typically associated with Down syndrome do not account for the extremely large gap that this study found.

This information was published over ten years ago, and looks at data from 1983 to 1997, but according to Dr. Michael Harpold of LuMind, no follow up studies have been done.

Star Power

This week, an article published on “SheKnows” brought another voice to the table.  The headline read,

Beverly Johnson on how Down syndrome affects children of color differently

In the article, the supermodel and spokesperson for the Global Down Syndrome Foundation is mostly asked about things that would interest the “Entertainment” audience – but one line sticks out:

 “There’s a remarkable disparity between children of color who get Down syndrome — life expectancy is age 23 — and non-black children with Down syndrome — life expectancy is 63 years old,”

We are grateful to have a star-quality voice bring this important issue to mainstream media.

Power in Numbers

The Road We’ve Shared is taking this opportunity to try, once again, to bring this issue to the attention of our community and researchers.  Our national organizations are always willing to help us advocate for issues we find important.  Let’s tell them this is important!

Sign our petition and let our national advocates know that we need help getting this corrected.  We need more research in this area.

All of our loved ones deserve to benefit from the successes we have worked so hard for.  We will not discriminate within our own community!

Please sign, and share our petition with your networks!

Tweet: I want to know why! http://ctt.ec/8b9H7+ Research needed for life expectancy by race with Down syndrome. #DsRoad

Click the bird to share on Twitter