Lillie Johnson, Ontario's first black director of public health, was named to the Order of Ontario earlier this week for her decades-long lobbying that led to sickle-cell disease being included in standard newborn screening.
Since 2006, all Ontario babies are screened for the disease.
"The doctors did not know these infants were being born with sickle cell. Because they were not testing if the gene was there . . . these children got very, very sick and we lost a lot of babies," Johnson, 88, of Scarborough, told CTV News.
The genetic disease -- which disproportionally affects African-Canadians -- affects the hemoglobin in the red blood cells, making the cells susceptible to becoming rigid.
It is a painful disorder that can damage tissue and organs and possibly even lead to stroke.
As a young nurse, Johnson treated many patients with the disease. During the 1960s and 1970s, many patients died of the disease because not all doctors were familiar with the symptoms of sickle cell.
In 1981, Johnson founded the Sickle Cell Association of Ontario.
"Lillie's work in this area has been exemplary -- trying to educate not just patients and their families -- so they know what their rights are – but trying to help educate caregivers so that they know what to do for these patients," Dr. Isaac Odame, of the Hospital for Sick Children, told CTV Toronto.
With a report from CTV Toronto's Karlene Nation
