March 21, 2014 was World Down Syndrome Day. I found an interesting article posted on the CBC website that talks about what the day means:
It’s a day meant to encourage an open conversation about what it means to have Down syndrome, and the important roles people with Down syndrome play in their communities around the world.
The article outlines why March 21 was chosen, interestingly enough, “the most common form of Down syndrome is trisomy 21, which results in extra genetic material in the 21st chromosome”. In honour of the day people are encouraged to wear bright, colourful socks in hopes of encouraging dialogue about Down syndrome, attempting to clear up much of the misinformation that circulates about it.
The goal of this year’s campaign was to bring awareness about the health of people with Down syndrome and that the condition itself is not a disease. Another issue brought forth was access to healthcare on an equal basis, just like everyone else. For me, this issue really hit home.
About twelve years ago my brother Jeff, who has Down syndrome, complained for several days of a headache at the base of his skull. Jeff can communicate, but finding out details can often be hard. His caregivers took him to our family doctor, who knew something was wrong right away. Why? Because he knew my brother for 20 years and that if Jeff was complaining, there was something wrong. The time previous that Jeff admitted to being sick and needing help, he had pneumonia.
Our doctor requested at CT scan immediately, to which he was told “we are not going to give him a CT scan for a headache”. Jeff was unable to communicate anything further than having a pain in the back of his head, but our doctor knew there was more to it. He called back, informing the imaging people that if they did not give him a CT scan, he would go to the media and ask why a man with Down syndrome could not get the testing he required. The scan was done later that morning and Jeff was in brain surgery at eleven o’clock that night. He had a benign tumor, the size of a man’s fist, which had probably been growing for fifteen years. Jeff came out of that experience fine, is here and healthy twelve years later.
Jeff was blessed, our doctor knew him and was his advocate. I don’t know if many people with Down syndrome are lucky enough to have someone who knows them well and can help them navigate through the medical system. I would hope that every day we are striving to provide this kind of care for everyone in our society.
See the full article here http://www.cbc.ca/strombo/news/world-down-syndrome-day.
By Joanna Redfern, Volunteer Blogger
For more information about Joanna, please go to: http://www.createitemporium.com.
Semiahmoo House Society, a non-profit organization located in Surrey/White Rock, exists to provide quality services and supports to people with disabilities and their families in the community.
The Semiahmoo Foundation, located in Surrey/White Rock, exists to fund, support and enhance the programs and services delivered by Semiahmoo House Society.