Odds long, payoff great

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This article was published 22/12/2019 (2123 days ago), so information in it may no longer be current.

About seven years ago, Theresa Cianflone began noticing that something about her health just seemed to be off. She got sick a lot, and bruised easily. She felt tired, in ways far beyond what she’d become used to as an active business owner and mother. All in all, she says, she just felt wrong. 

Eventually, doctors found an answer. Cianflone was diagnosed with a rare blood disorder, one which weakens her immune system and causes bone-marrow failure. Her best hope to get back to health is a stem-cell transplant, but after more than two years waiting on the Canadian stem-cell registry, she has yet to find a match. 

The waiting is hard, Cianflone says. Matches are rare — about as rare as winning the lottery — and people in need often find themselves on the list for years. When they do find a match, there is still a big risk of disappointment: as many as 60 per cent of registered donors who do come up as a match opt not to continue the process. 

Now, Cianflone is hoping that someone out there is carrying a chance at a better life in their veins — not only for herself, but for the rest of the hundreds of people waiting months — and most often, years — on stem-cell recipient registries across the globe. And she’s using her own business to help find them. 

On Saturday afternoon, Cianflone threw open the doors of Cafe 22 to host a stem-cell donor drive. Together, with officials from Canadian Blood Services, a volunteer team was on hand to distribute information about stem-cell donation, as well as to help prospective donors sign up for the registry with a simple cheek swab. 

“The result from today could literally save someone’s life, when they didn’t have a chance before that,” said Mike Choi, Canadian Blood Services’ Winnipeg territory manager. 

The atmosphere in the café was buzzing as folks strode in to fill out registry questionnaires, chat with blood-donation experts and nosh on holiday baking. At a table, 24-year-old Alia Cappellani sat with volunteers, rolling a swab around the inside of her cheek; the process of registering as a donor was “easy,” she said. 

“It takes maybe a minute or two, and it’s definitely worth it to extend someone’s life,” said Cappellani, who is close friends with Cianflone’s daughter. “Knowing that something that I take for granted could even help save someone’s life, and help them enjoy want they want to do… It’s amazing.”

Within the first hour of the donor drive, more than 25 people had registered — and since Canada’s registry is linked with others across the globe, any one of them could spark a hope that travels the world. 

“If one person wins this (donor-registry) lottery today or tomorrow, it was worth it,” Cianflone said.

She doesn’t use the word “lottery” lightly: the chances of a donor matching with a person in need are less than winning the lottery, said Adrienne San Juan, Canadian Blood Services’ stem- cell territory manager for Western Canada, who flew out from her office in Vancouver to attend the Cafe 22 event. 

San Juan knows exactly how hard that can be. Her journey with stem- cell donation began last year, when her teen sister was diagnosed with two rare blood disorders and needed a transplant. But the majority of donors on global registries are white, and San Juan’s family is Filipino, which made the chance of a match even lower. 

To help improve the odds, San Juan helped lead a series of donor drives across Western Canada, including one in Winnipeg last year, where more than 1,000 Filipinos turned out to be swabbed. Her sister ended up finding a match, and received her transplant earlier this year; today, she is “doing well,” San Juan said. 

Now, she works helping other patients and their families spread the word about stem-cell donation. 

“I know exactly what Theresa’s feeling, and her family, and the struggles that they go through trying to find a match for their loved one,” San Juan said. “Patient campaigns like this are really important. Often times, people have more of a connection when they see a face to it and think, ‘This could be my mom, or my sister.’” 

The event also helped promote blood donation, as Cianflone benefits from treatments including blood products. Around 2.6 per cent of eligible Winnipeggers donate blood, Choi said, and there is always a need for more. A car-accident victim might need 50 units of blood; some cancer patients go through five units each week. 

“If folks are looking for something to do to help support the community, then blood donation is a great way to contribute,” Choi said, noting that donors are now notified when their blood is shipped off to help an individual in need. “If everybody who was eligible donated once a year, we would have an overabundance.”

The donor drive continues this afternoon at Cafe 22, which is located at 823 Corydon Ave.

Interested folks can also register online at blood.ca/stem-cells. After filling out a short online questionnaire about their health history, they will receive a cheek swab kit in the mail, which they can use at home and send back to the registry. To register as a stem-cell donor, people should be between the ages of 17 and 35. Once entered into the database, donors will remain on the registry until age 60. 

melissa.martin@freepress.mb.ca