Edmonton family continues to push for more Asian stem cell donors

Click to play video: 'Movement for Asian stem cell donors' Movement for Asian stem cell donors
WATCH ABOVE: The family of Bille Nguyen is continuing a push to get more people of Asian descent to become stem cell donors. The need is great - only 16 per cent of One Match registered donors are Asian. Julia Wong reports – Aug 25, 2018

An Edmonton family is continuing their crusade to raise awareness about the need for Asian stem cell donors, weeks after a match was found for their brother who is fighting a rare blood cancer.

On Saturday, volunteers manned tables at the Foundry Room for the United Asia event, a stem cell swab drive organized by the One Love Event. The event was spurred by the need to find a donor for three Asian cancer patients in the country.

A poster encouraging more people of Asian descent to become stem cell donors. Courtesy/Canadian Blood Services
A poster encouraging more people of Asian descent to become stem cell donors. Courtesy/Canadian Blood Services
A poster encouraging more people of Asian descent to become stem cell donors. Courtesy/Canadian Blood Services

READ MORE: Saving Bille Nguyen: Edmonton family on mission to rally Asian stem cell donors

“We are calling it United Asia because we want to overall widen the stem cell donor pool for any ethnic background,” said Susan Nguyen.

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Nguyen is the sister of Bille Nguyen, who doctors gave a 10 per cent chance of surviving Stage 4 subcutaneous panniculitis t-cell lymphoma without a stem cell transplant this summer.

The family organized stem cell drives in Edmonton as well as Calgary, hoping to find a match in the Asian community; ultimately sister Susan was confirmed to be a match. The transplant is on hold indefinitely, however, while Bille undergoes at least two more rounds of chemotherapy.

READ MORE: Stem cell transplant for Edmonton man battling rare cancer on hold

“It’s just been a terrible nightmare,” Susan said.

“It’s important we get out there [and] raise awareness so that the next person who needs to match, they don’t need to go through this.”

READ MORE: Match found: Alberta sisters thrilled to find stem cell donor for brother, possibly others

Only 16 per cent of registered donors on OneMatch are of Asian descent, meaning it can often be more difficult for Asian cancer patients to find a match.

“It’s for the future patients. This is for anyone later on that’s going to need a match,” Susan said about why the drive was so important.

“It’s very hard to find a match already but if you have a very small pool to select from, it’s even harder to find a match.”

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Susan admits it can be hard to break through cultural barriers to encourage more people of Asian descent to donate, but it can potentially be the first step in saving a life.

“We want to be the loud ones, get out there, raise awareness and let other people know. It really bothered me I didn’t know about this before until it hit me directly, so I don’t want people to sit there and have it affect them before something is done,” she said.

Emery Mance was one of the first donors through the door on Saturday. The Edmonton woman heard about the swab drive through friends and heard about Bille’s story through social media, but it was something very close to home that spurred her to attend the event.

“I actually have a family member who lives in Calgary diagnosed with two very rare blood diseases,” Mance said.

“I know in the future she’ll be needing some sort of stem cell donor, bone marrow donor.”

Mance said seeing her relative in the hospital really hit the point across.

“I know I really wanted to do something to help. There’s really limited ways but I know this is a really strong way to help towards her recovery and her journey through this.”

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Mance said a lack of awareness may be preventing people in the Asian community from becoming donors.

“I think getting the word out – just talking to your peers, workmates, family members – and getting them to be more aware and seeing this is an issue within the minority communities,” she said.

Organizers hope to make the stem cell swab drive an annual event to encourage ethnic minorities to become part of the donor pool.

Those unable to attend the event on Saturday are encouraged to self swab during walk-in hours at the Canadian Blood Services or register online.

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