Occasionally, after a presentation, someone will come up to Dr. McGuire or me and tell us that they can’t relate to some point that we made. After hearing this a few times, a pattern became clear. This was being reported by families with a younger person with Down syndrome. Their experience was different than families of our older patients. The differences seemed to be based on:
I address each of these in greater detail in separate resources.
The overall difference was that we are seeing people with Down syndrome do different things that they were not able to do before. Much of it is based on the 4 issues noted above.
We call the changes the “Two Syndromes.” This is completely theoretical (i.e. “I made it up.”). Clearly, there are still the genetic challenges of having an extra 21st chromosome. Clearly, there are those who each have an extra chromosome but are affected differently (i.e. the severity of their challenges is different). However, compared to 100 years ago, 50 years ago, even 10, 20, or 30 years ago in some situations, the above four factors have changed for people with Down syndrome. Due to those changes, we are seeing people with DS who are doing things they could never do in the past. Genetically, it is not a new syndrome. However, functionally for the families that couldn’t relate to a point in our presentation, it is like two (different) syndromes. It is exciting to be part of seeing where people with DS are going. We address each of the 4 issues in other resources.