I'd like to begin by saying, "What a crummy name!" There's power in a name. Imagine what the baseline thinking about our kiddos would be if the guy who identified the syndrome had the last name "Upp."
Think of the diagnosis delivery alone: "I'm sorry, but your baby has Upp syndrome," doesn't sound quite right, does it? Doesn't it sound like it should be delivered in a more encouraging way? I've actually heard several self-advocates (adults with Down syndrome) refer to themselves as having "up syndrome."
Most individuals with Down syndrome whom I've had the pleasure of meeting definitely have more of an "up" attitude than a "down" attitude. This might be part of the stereotype that people think individuals with Down syndrome are always happy. They're not always happy. They experience a full range of emotions just like everyone else. In my opinion, the "happy" stereotype is because they tend to not hold onto negative emotions like so many of us "typicals" do. But that's a subject for another day, perhaps.
Back to the question at hand. My friend, Jenn, asked me to share about the history of Down syndrome.
In 1866, an English doctor, John Langdon Down, first described the condition, which subsequently assumed his name. It took until 1959 for a geneticist, Jerome Lejeune, to discover that the condition is a result of a triplication of the 21st chromosome (aka a trisomy). There are two other rare forms of Down syndrome: mosaicism(2%) and translocation (4%). Mosaicism is when the extra copy of the 21st is not present in every cell, only some of the cells. Translocation is when the extra copy of the 21st chromosome attaches to a different chromosome. Translocation is the only type of Down syndrome that *could* be inherited (though it isn't always).
For a long time, the condition was referred to as "mongoloid," showing the level of ethnic prejudice that existed then. Individuals with Down syndrome were systematically institutionalized until as recently as the 1970's here in the US (it's still happening in other countries... more on that when I do a Reece's Rainbow post).
There are only a few more days left in October. Any other questions you'd like me to address?
1 month ago