When Deborah Hunte’s twin sister, Sandra Hunte-Fedeli, succumbed to complications from sickle cell anaemia 13 years ago, she felt a sense of grief and guilt.
“It was like if half of me was missing and I felt as if my life had ended too when she left us,” said Hunte. “We were very close, she was everything to me and we did everything together.”
After the initial grieving period subsided, Hunte decided she was going to live the rest of her life for the two of them and engage in activities she believed would make her sister happy.
In addition to travelling more, she completed a skydiving jump, operated a crane on the new SickKids Centre for Research & Learning construction site and started riding motorcycles eight years ago.
The adventurous 49-year-old Hunte is also a spokesperson for Canadian Blood Services (CBS).
“I am alive today because people like you donated blood,” Montreal-born Hunte, who was diagnosed with the disease at age two, said at a CBS event last week. “I had Sandra for 36 years because of Canadian Blood Services and people like you, so this is the least I can do now for this organization.”
A disease that affects mostly people of African descent, sickle cell is a life-threatening and hereditary blood disorder that causes malformation of red blood cells that become distorted when they transmit oxygen through the body.
Hunte’s brother has the disease while an older sister, Karen, who is a Toronto Police officer, has the trait.
The bone pain can be unbearable sometimes and sickle cell sufferers miss substantial school and work time because of frequent hospitalizations.
Despite the challenges, Hunte graduated on time from Cedarbrae Collegiate Institute and has led a successful life. She attended university, worked at a downtown law firm and is a project manager with the Ministry of the Attorney General.
“I have to be prepared for crisis such as a change in temperature, the flu and stress that trigger it,” she said. “I have spent a lot of time in hospital and this has not been one of my good years so far. A few months ago, I was suffering from extreme fatigue and my hemoglobin was low. I am now on EPO (a naturally-occurring hormone) to help stimulate the kidney and that in turn helps to produce red blood cells in your bone marrow. I am on the mend now and I have to deal with crises when they come.”
In order to control the pain and ensure that Hunte remains healthy, it’s critical that the Black community steps forward and make blood donations since the disease requires a specialized blood sub-type.
Like blood, stem cell and marrow donations are also sub-type specific when used in similar applications.
Blacks can register as blood and stem cell donors through the CBS, One Match Stem Cell and Marrow Network.
While Blacks represent some 2.5 per cent of the population, only about 0.7 per cent of the nearly 340,000 Canadians registered with the blood agency, stem cell and marrow network are Black.
“That means that if you are a Black person with leukemia or another blood disorder and you are not lucky to have a brother or sister who is a perfect match, the odds that you find somebody else is very, very low because not many Blacks have volunteered to be on the registry,” said Dr. Isaac Odame, medical director of the Hospital for Sick Children’s Global Sickle Cell Disease Network. “For a White person, there is a 75 per cent chance that they would find somebody else who is not a family member.”
There are 35 Black patients waiting for a stem cell match from an unrelated donor.