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Calgary woman speaks up about challenges of living with rare disease

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Calgary woman speaks up about challenges of living with rare disease

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“My condition is pretty good. The other types would be more severe and would cause more issues, especially in early childhood. But also, a lot of my symptoms weren’t noticed in early childhood because they just weren’t noticeable,” said Spoljarevic.

“Even just getting a common cold can have a big impact on my health, a cold or a flu can be a lot more severe for me so I spent a lot of time away from school.”

Kealey-Shay Spoljarevic, who suffers from a rare liver disease, wants to spread awareness especially during the pandemic when other people’s decisions could impact her health and others’ in Calgary on Wednesday, July 29, 2020. Darren Makowichuk/Postmedia

There is no cure so, for some patients with PFIC, the only options are surgical interventions such as partial external biliary diversions or liver transplants, which both come with significant risks and don’t solve the cause of the disease.

Spoljarevic takes a “small pharmacy” of medication to help with her symptoms, such as itching. She can cope with her symptoms fairly well but they still keep her from driving a vehicle or getting a full-time job.

During the COVID-19 pandemic, Spoljarevic has had to be extra cautious because the novel coronavirus would be severely harmful to her health.

“Because PFIC is an invisible disease, there’s a big problem with being ignored by people. It’s scary, especially now during a pandemic. My partner is being asked to return to work but that’s not safe for me,” she said.

She’s hoping that bringing awareness to PFIC can lead to a call for more information and research about the disease so a cure or better treatment can be found. She also wants more doctors to familiarize themselves with PFIC after she was given medication at a walk-in clinic a while ago that caused her to have a severe reaction.

“I want to give hope to others dealing with this condition. The more research that’s put into it, the safer this can be for us. We all need to be a little kinder to each other and a little more understanding,” said Spoljarevic.

sbabych@postmedia.com

Twitter: @BabychStephanie



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