Comfort Anyaele has a son with sickle cell disease.
"For 16 years I have been hiding it," she told people at TAIBU Community Health Centre this week. "At a certain point of time, I decided not to hide it any more."
Anyaele burst into tears after sitting down.
People with the disease face teasing or unjust treatment at school and suspicion at work or in emergency rooms when they arrive seeking medication for the pain it causes, said participants in an event Tuesday, June 19, to mark World Sickle Cell Day.
Many, because of a social stigma against sickle cell disorders and a lack of community support, have hid their condition.
A shelter worker and a volunteer with the Sickle Cell Association, Anyaele said she has tried to encourage people who are hiding the disease to "come out and talk about sickle cell."
Knowledge is lacking about the disease in the communities most likely to carry the genetic trait passing it on, and not enough testing - which can easily discover when two people have the trait and risk producing a child with the disease - takes place, the gathering heard.
There's a misconception "sickle cell is all about black people" when it has affected people around the globe, including many in mixed marriages, said Doreen Alexander of the Sickle Cell Awareness Group of Ontario.
People don't take notice of sickle cell until it hits home, she said, urging not to wait before checking their genotype for the trait, "whether you look like me or not,"
One man at the Malvern-area health centre, which has a special mission to serve Toronto's African-Canadian residents, was applauded for urging everyone to talk about sickle cell with three people they didn't know.
Tuesday's gathering - billed as a celebration of successes that are allowing sickle cell sufferers to lead fuller lives - was "about making the invisible visible" and raising the profile of sickle cell in Ontario where employees with the disease can lose their jobs and students often drop out of school, said Floydeen Charles-Fridal, president of TAIBU's board of directors.
She urged people to support Eglinton-Lawrence MPP Mike Colle's private bill, re-introduced this month, calling for a co-ordinated care and advocacy strategy on sickle cell disease and thalassemia, another inherited blood disorder.
The bill would also proclaim a Sickle Cell and Thalassemia Awareness Day in Ontario to coincide with the United Nations' day, June 19.
TAIBU researched the social needs of sickle-cell patients and it was clear there is a huge gap in support, said Liben Gebremikael, the centre's executive director.
The centre is hosting monthly meetings of adults with sickle cell and has talked about the disease to hospitals, including The Scarborough Hospital, which responded by changing its emergency department protocol, but Gebremikael said "the road has just started" in terms of getting more positive treatment for sufferers from schools, employers, and others.
It is also starting to offer primary care at the CHC with Dr. Larry Grossman, who said people with sickle cell can learn to manage the disease and avoid a crisis just as they can for other chronic illnesses.
Roughly 1 in 700 to 1 in 1,000 people in Toronto carry the trait, which can warp the shape of red blood cells and cause them to block vessels or rupture.
The child of any two people with the trait has a 25 per cent chance of having the disease, he said.
"This is a disease we create for ourselves by not knowing what our status is," Grossman added. "It is completely preventable."
But while wondering why more people don't get tested to determine their sickle-cell status, Grossman also called for an end to the stigma surrounding the disease, which shortens life expectancy for men to 42 years.
People who live with sickle cell shouldn't be stigmatized, they should be "praised and honoured," he said, while employers have to realize the disease can prevent people from functioning normally. When workers with sickle cell call to say they have pain and have to stay home, they really do, Grossman said.