I just learned about a recently named condition: Down syndrome regression disorder (DSRD) from an article (read for free here) in the Washington Post. But I also learned that the reason this condition has gone unnamed and undiagnosed for so long lies in the biases that doctors have for patients with Down syndrome. 

The Post profiles a number of young women and men who went from being bubbly, engaged participants in family and school life to being nearly catatonic. Most doctors were dismissive when their parents sought treatment. 

But a few doctors paid attention, and finally one of them, Jonathan Santoro, wondered whether an aggressive autoimmune response was wreaking havoc in his patients. According to the Washington Post:

“Santoro, who spearheaded the 2022 paper defining DSRD, said he believes that the regression symptoms had historically been downplayed by the medical community because of a bias many doctors may have about people with Down syndrome and intellectual disability. ‘If you brought your perfectly healthy teenage son or daughter in and they were not sleeping, not eating, catatonic and hallucinating, we would admit them to the hospital and do a full workup,’ Santoro said. ‘And we weren’t doing that with individuals with Down syndrome.’”

Because Santoro and a few other doctors were able to see their patients with Down syndrome as persons deserving comprehensive care, they embarked on life-changing treatments. This is a story of institutional bias against people with Down syndrome. It is also a story of individuals—parents and doctors—who refused to give into that bias. They are the ones who are helping reimagine a good future, and I am so grateful for them.

MORE WITH AMY JULIA:

• S7 E4 | Breaking Down Bias: Prenatal Diagnoses and Comprehensive Care with Stephanie Meredith 
• What I Learned from “The Disruptors”
• How Language Shapes Our Imagination

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