Teen battling extremely rare condition needs a Filipino donor
Published Saturday, October 27, 2018 5:27PM MDT Last Updated Saturday, October 27, 2018 6:59PM MDT
A Calgary family hopes the Asian community in Edmonton can help save their daughter, who is the one in a million to be affected by a rare and serious disease.
Roshlind Mance was diagnosed just weeks before her 16th birthday, after she was taken to the hospital to treat a panic attack that nearly made her pass out at summer school.
Following blood tests, a blood transfusion, CT scans, ultrasounds and three weeks in the hospital, doctors diagnosed the teenager with aplastic anemia and paroxysmal nocturnal hemoglobinuria, also known as PNH.
Both are life-threatening diseases of the bone marrow that affect the blood and major organs. The former means Mance’s bone marrow does not produce enough blood cells. The latter creates and produces red blood cells, but they are abnormal and eventually get destroyed by the body.
“Just one disease is hard enough to deal with,” said Mance. “But I have two. It’s just made it harder on me.”
PNH affects about one person per million.
“Since her diagnosis, she's been in and out of the hospital for bruising, for body pains,” Mance’s sister, Adrienne San Juan, said. “At times she couldn’t even walk and our dad has to carry her to the bathroom.”
Their mother has stopped working to take care of Mance full time. Her father still works, but has to take Mance to the hospital twice a week for blood transfusions, which help the teenage girl maintain normal blood levels.
“Without my family I don’t think I would be as strong as I am right now,” Mance said. “The support and love and hospitality I’m getting from them is unbelievable.”
The rarity of the disease makes it very expensive to treat, at an estimated cost of $500,000 per year. According to San Juan, her sister’s doctors applied for coverage from the provincial government this year but were denied.
The situation has left the family with one hope: finding a stem cell transplant donor.
However, none of Mance’s family are a donor match, and so they’ve made a public plea for help from Alberta’s Asian communities.
“Out of the whole Canadian stem cell data base, only 28 per cent is ethnically diverse and of that 28 per cent, only one per cent is Filipino,” explained San Juan.
Mance’s family launched a Match for Roshlind Campaign to help find donors from ethnic groups.
“Please, we urge you to donate,” San Jan said. “Because it could be not just my sister, but your mom, your dad, your brother, your sister. We never want another family to go through the pain and heartbreak of not having a match, like we do with Roshlind.”
They’re working to reverse the misconception that testing compatibility or donating is painful, and are planning events in Edmonton, Calgary and Winnipeg.
Just a few months ago, Mance had been working ahead on classes, anticipating getting her driver’s license, and having fun with her sisters or drawing.
Now, she says she has fallen out of interest with hobbies and out of touch with friends.
“I miss going to school, attending classes, being around teenagers,” she said. “I miss having a normal teenage life. I don’t want to be in the hospital anymore.”
The Edmonton event will happen on Sunday, October 28 at the Manila Grill Restaurant.
“It would mean the world that people care,” Mance said.
With files from Nahreman Issa