History of Down Syndrome

I had a half sister named Sydney who was born in the early 60's. She subequently died in a horrible institution as a toddler.

Background Information

The Origins of the Term Down Syndrome

In 1866 British physician, John Langdon Down, for whom the syndrome is now named, first described Down syndrome, as “Mongolism.” The term Down syndrome didn’t become the accepted term until the early 1970s. More was learned about the condition in 1959 when French Pediatrician/Geneticist Professor Jerome Lejeune discovered that individuals with Down syndrome have an extra chromosome—just one year before NADS was founded. Shortly thereafter, chromosome studies were developed to confirm the diagnosis of Down syndrome.

Historical Climate

During the first half of the twentieth century in the United States, the majority of children with Down syndrome were placed in institutions – frequently soon after birth. This resulted in great human sacrifice for those individuals and for their families, who were convinced, often by members of the medical community, that the child was less than human and that their needs would be so great, their families would not be able to raise them. These children were “warehoused” in large state institutions – often in deplorable conditions – locked away so that the rest of society could not see the horror of their lives.