As we say goodbye to Down syndrome Awareness Month, I’d like to personally thank all those who participated and helped us with our efforts!   We managed to finish strong on the 21 for 31 blog challenge and we had so many great photos! 

While sharing stories and pictures was fun, we also started on a mission of greater importance:  spreading awareness of health disparities within our own community.  Thanks to Global Down Syndrome Foundation’s national spokesperson, Beverly Johnson, the huge difference in life expectancy for people of color who have Down syndrome and Caucasian people with Ds was reported in mainstream media.  

 ”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 so grateful that someone with her star power spoke out on this issue.  In response, we created a petition to try to get advocates and families to help us ask the national Down syndrome groups to spend more time and resources on this issue.  Within days, we heard from 3 of the 4 groups petitioned, and we’ve started a dialogue around this issue.

More Research is Needed

“Non-Hispanic black children with Down syndrome were twice as likely to die during childhood and adolescence compared to Non-Hispanic white children with Down syndrome.”  (Dec. 2012)

It’s a huge problem and their aren’t any easy answers.  We look forward to continuing our conversations with the doctors, researchers, and our national advocates, while we search for ways to address this important issue that has been ignored for too long. 

Alone we can do so little; together we can do so much.

Helen Keller

Adult Health Issues Month

During the month of November we’ll be looking at specific health concerns for adults who have Down syndrome.  According to the research, those include visual and hearing impairment, epilepsy, thyroid disorders, osteoporosis, obesity, diabetes, and poor dental health.   Other areas of concern are a lack of physical activity and the affects of taking multiple medications for many years.
Join us for more discussion on these issues and information about National Family Caregiver’s Month in the coming weeks.