Misconceptions frustrating stem cell appeal, family of Filipino teen says
Published Wednesday, November 14, 2018 9:25AM EST
The family of a Canadian teenager with two rare blood diseases has made a desperate plea to the Filipino community in a bid to find a life-saving stem cell match.
This summer, Roshlind Mance was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria or PNH. The only cure for the life-threatening disorders is a cell transplant.
The 16-year-old is confined to her Calgary home, her only outings to the hospital twice a week for blood transfusions.
“It’s a very simple procedure to save my sister’s life,” Adrienne San Juan told CTV’s Your Morning.
Roshlind’s relatives were heartbroken to discover they are not suitable donors and the odds for Roshlind are slim, with her best chance now a match from someone of the same ethnicity.
Canadian Blood Services told CTV News that only 0.9 per cent of the adult stem cell donor database is Filipino.
“I think the stigma with why there’s such a low Filipino donor pool is because they think it’s some sort of big surgical procedure, when in reality it’s just a small day procedure,” she said.
“We really are trying our best to help, not just her, but hopefully the 34 other Filipino Canadians waiting for a match as well.”
At the moment Roshlind is stable, the family’s last trip to the emergency room was Thanksgiving weekend.
“But she is quite tired and usually in pain,” Adrienne said.
Roshlind’s family has already held donor drives in Edmonton and Winnipeg.
“Due to the amount of work that we’ve put in and the amount of Filipinos in the cities that we did drives in, I still don’t think that it’s enough,” Adrienne said.
“I still don’t think that we’re getting that awareness out there as much as we’d like to.”
Donors can go to any Canadian Blood Services clinic and do a self-swab of their cheek or visit the website Onematch.ca, fill out a health questionnaire and CBS will mail a swab kit with return postage.
“Hopefully other families won’t have to go through this big fight to find a match,” Adrienne said.
For more information visit Match 4 Roshlind.