Edmonton man in desperate search for Asian stem cell donor
As an Edmonton man undergoes a life-or-death search for a stem cell donor to help him fight a rare blood cancer, he is highlighting the growing need for Canadians of all ethnicities to register as donors.
Bille Nguyen, 25, was diagnosed in January with a rare type of lymphoma called SPTL, or Subcutaneous Panniculitis-like T-Cell lymphoma. It accounts for only one per cent of all lymphoma diagnoses in Canada – so rare, in fact, that there are no set protocols on how to treat it.
The previously healthy Nguyen has undergone several round of aggressive chemotherapy treatments but they have failed to stop new tumours from growing under his skin. Doctors told him his best hope for a cure would be a stem cell transplant.
The problem is Nguyen is of Vietnamese and Chinese heritage, and there simply aren’t any donors in the OneMatch national registry who match his genetics.
Close to 70 per cent of the registered donors are Caucasian, and of the rest, only 16 per cent are Asian, with donors of Vietnamese descent vastly underrepresented.
Nguyen’s family has now organized a widespread stem cell donor drive in hopes of finding a match. They held a swabbing event in Edmonton earlier this month that resulted in about 800 new donor sign-ups, and a similar drive in Calgary over the weekend, encouraging Asian-Canadians in the city to consider registering.
Jonathan Ho was one of the potential donors who signed up. He says his family knows the Nguyens and he came out after reading Nguyen’s story on his website.
“I talked to my mom and I talked to my sister and I signed up on OneMatch,” he said.
Ho says undergoing the mouth swab to collect a DNA sample was easy.
“A couple swabs and then you’re done. How much more time is it in your day?” he said.
Nguyen’s sister Susan says that swab and all the others being collected could mean life or death for her brother. Even if the donor drive doesn’t result in a match for her brother, her family is also hoping to raise awareness about the need for people of all ethnicities to join the stem cell donor registry.
“It’s going to help not only my brother, it’s going to help someone else out there,” she told CTV Calgary.
“I believe that in this group and maybe the Edmonton one, maybe we’ve saved someone else’s life that’s been waiting for a match.”
Those who can’t attend the donor drives can also register online at OneMatch.ca and a swab kit can be sent out in the mail.
If a match for Nguyen isn’t found before the end of his current round of chemotherapy, he will need to undergo a seventh round -- something the family wants to avoid.
“The more chemotherapy you do, the harder it is on your organs,” Susan says.
Susan says her family knew nothing about stem cell donations before her brother got sick, and wants others to put themselves in her family’s shoes/
“I ask everybody the question: if it was your brother, your sister, your dad, or your mom, how far would you hope a stranger would go for your family?”
With a report from CTV Calgary’s Brenna Rose