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Learning to live with Lupus: teen girl stays positive about her condition

Mar 18, 2016 | 5:17 PM

“When they said there was no cure, I got sad.”

Krissen Swiftwolfe is a 14-year-old member of the Moosomin First Nation who has Systemic Lupus Erythematosus (SLE), an autoimmune disease that triggers her immune system to attack her body’s healthy tissue.

Krissen has seen specialists in Saskatoon since her diagnosis in Aug. 2015, as there are no local resources beyond physiotherapy available to the family. On average, the Swiftwolfes have to go to Saskatoon three to four times a month for Krissen’s various treatments, which accrues a considerable cost for the family.

The Swiftwolfe family is hosting a steak dinner fundraiser on Mar. 19, 2016, at the Moosomin Arena to help raise funds to pay for the continued costs of Krissen’s care.  

 “It started on July 20, 2015,” Krissen said. “It was my ankles that hurt and I just put ice on them.”

“When we found out it was hard to believe,” Krissen’s mother Melanie Swiftwolfe said. “It was like a bad dream.”

“We didn’t even know what up was,” Krissen’s father Donovan Swiftwolfe said.

“To me, it devastated me,” he continued. “I blamed myself. I was in denial at first. I accepted it and decided to try and deal with it.”

While symptoms vary between people, joint pain and inflammation are constant among all SLE patients.

When Krissen was first diagnosed, she was an active teenager with a deep love for soccer. She became physically limited, but after Prednisone for a month she was back on the soccer field for short periods.

“In my first game my legs cramped up,” she said. “I felt not as strong. I couldn’t get into it right away.”

But, she was optimistic she would be back at it soon enough.

Initially, coping was challenging for the whole family, including Krissen, her parents and her two teenaged siblings. The amount of information they had to digest after her diagnosis was overwhelming, as the family knew nothing about Lupus before.

“It helped her to find out that Selena Gomez has lupus,” Donovan said, smiling at his daughter.

“Yeah, she does,” Krissen said, half smiling back. “That helped me.”

There are members on both Krissen mother’s and her father’s side of the family that have SLE.

“There are known genetic risks for lupus,” Cheryl Marie Barnabe, an assistant professor in the department of medicine and community health sciences at the University of Calgary, said in an email. “However there are likely still many undiscovered genes that are associated with SLE…So most people have inherited their risk for getting lupus – but it takes further exposures or situations to trigger the disease to present clinically.”

A study published in The Journal of Rheumatology in 2000 looked at the prevalence of SLE in Cree and Ojibway populations in Manitoba, finding the disease more than twice as prevalent among First Nations women. The study also concluded that First Nations people with SLE were developing the illness younger that corresponding groups and were four times more likely to die from the disease. 

“I try and be more positive,” Krissen said with a seemingly genuine optimism about her condition.

dcairnsbrenner@jpbg.ca