Charles Ofori-Attah was diagnosed with sickle cell disease when he was only six months old.
Charles Ofori-Attah speaks from the podium at Library and Archives Canada in a clear and confident voice, without notes or hesitation. His passion and conviction bring smiles to the faces in the audience and nods of understanding.
As the keynote speaker for the city’s official launch of Black History Month, he is an important advocate and a model for the 2008 theme, “Minding Our Health, Building a Community.”
Ofori-Attah smiles widely as he laughs with his friends. Raising his voice to be heard above the din in the crowded university space, he leans forward to point to something in the textbook the group is sharing.
Outwardly, there’s nothing that separates this 18-year-old from any other Carleton University student.
But Ofori-Attah has fought hard to get to this level of so-called normalcy.
“If you don’t have a healthy community, you can’t build a community that’s healthy and vibrant,” says Sarah Onyango, Black History Ottawa public relations officer. Black History Ottawa has organized the Feb. 1 event since 1985.
Onyango says that the black community has lost too many prominent and dynamic members due to health problems that could be prevented by increased awareness.
“You might have a condition you can overcome if you manage it properly,” she says, acknowledging Ofori-Attah as one of these success stories.
At six months of age, Ofori-Attah was diagnosed with sickle cell disease, a genetic blood disorder most prevalent in people of African descent. The red blood cells of people with sickle cell become deprived of oxygen and turn rigid, losing their flexibility and blocking blood vessels.
Dealing with his disorder was manageable at first, requiring only two to three trips to the hospital per year.
Unfortunately, a common childhood ailment was almost his undoing.
Ofori-Attah’s health took a dramatic downturn when he contracted the chicken pox which quickly developed into a flesh-eating disease.
After a 10-week stay at the Children’s Hospital of Eastern Ontario, his immune system was so badly damaged that even the slightest illness could bring him back to the hospital in sickle cell crisis – a painful situation caused by blocked blood vessels – with the threat of having a stroke a constant burden.
“For a few years, I was at the hospital more than at school or at home combined,” he says.
Ofori-Attah endured a flurry of hospital stays with various treatments and medications. “After my flesh-eating disease there was no immediate upswing. It just seemed to get worse. More hospitalizations, more infections,” he says. “It was very gloomy.”
“A typical day would be CHEO,” Ofori-Attah says, describing his life during those unstable years. “I would get up, go to the hospital – if I wasn’t admitted already – for blood work or tests and whatever today’s treatment happened to be.”
It was a lonely time for the young man, who was separated from his friends, not only because they were all at school, but also because they didn’t quite understand the disease and what he was going through.
He filled the parts of his days not spent at the hospital by reading, watching TV or catching up on school work.
“It wasn’t your normal 12-year-old, 13-year-old, 14-year-old day.”
That he was able to have even those quiet days was cause for relief. There were other days where his doctors were unsure if he would live through the night.
“There have been two or three instances in the past where I was really in the 11th hour, things weren’t looking well and there didn’t seem to be much hope for survival.”
However, things started to look up as he began high school. Ofori-Attah’s doctor recommended a new method of treatment called aphereis, a blood exchange transfusion.
The procedure involves roughly 80 per cent of his blood being taken out and replaced with healthy, donated red blood cells every few weeks.
“I’ve been on that for about four years and it’s made an enormous difference in my life,” he says. “The quality of life that I have been able to enjoy has been increased dramatically.”
Initially, the procedure was completed by means of a catheter surgically inserted in his chest, but now it can be done through his veins.
“After needle 1,000 it doesn’t exactly hurt anymore,” he laughs.
Ofori-Attah’s return to regular attendance at school came with a gruelling schedule full of extra courses to ensure he would graduate on time.
But his hard work paid off. In his final semester, during which he took eight courses, his class crowned him valedictorian in a landslide vote.
“When I started to return to normalcy in Grade 10 I didn’t want to be known as, ‘Oh, that’s Charles, the guy with the disease. Let’s have pity on him.’ I didn’t want it to be who I am,” he says. “And just by being who I am, I guess the other students saw that and appreciated it.”
Now nearing the end of his first year of university, Ofori-Attah says he doesn’t fault sickle cell for what he has gone through but will play the hand he has been dealt. He says having to deal with the disorder has introduced him to many people he would not have met and has allowed him to mature more than the average 18-year-old.
“There were times when I just wanted to go to school and be a kid, but I chose not to sit around and cry,” he says.
“I don’t know if it was a miracle, or doctors, or a culmination of both but I’m here today.”
He says he intends to make the most of the life he has and has already started to give back to the people who helped him to live past high school.
Studying public affairs and policy management with a specialization in human rights, Ofori-Attah is working toward the goal of being a lawyer.
“I’m really passionate about working with people, so I thought why not use a law degree to help make a difference in the community?”
He currently volunteers with various organizations including the CHEO Foundation and Canadian Blood Services, speaking at events and attending fundraisers.
As a member of the CBS regional liaison committee, Ofori-Attah advises on how to target young blood donors. However, he is also focused on recruiting more members of the black community to donate.
Currently only two per cent of eligible Black donors give blood, a statistic Ofori-Attah calls “atrocious.”
“We need more members of the black community to donate,” agrees Natalie St-Pierre, CBS spokesperson.
“There tends to be a better match of the antibodies and proteins in blood from people of the same diverse background.”
According to St-Pierre, there are 45,000 people who give 90,300 units of blood in north eastern Ontario and Nunavut every year.
For his transfusions, Ofori-Attah requires 10 units blood.
During February, St-Pierre says CBS works with groups like Black History Ottawa to put out an increased effort to recruit black blood donors.
However, she acknowledges that it isn’t enough, pointing to the establishment of the diversity liaison committee struck in late 2007. The committee meets monthly to investigate how to recruit donors from other diverse non-Caucasian communities.
“Health is the next frontier,” Ofori-Attah says. “We need to progress as one, not sporadic, different groups.”