Every day in February, we’re sharing content about rare diseases in anticipation of Rare Disease Day on the last day of the month. Learn about Karen Skålvoll, known for bringing a thoughtful perspective to her journey as a patient and an athlete.
Karen Skålvoll, an Alpha 1 patient, is certainly a fighter, but she doesn’t fight winter.
Maybe it’s her roots in Norway, where a concept called “koselig” has drawn attention from researchers trying to understand why some people get depression symptoms in winter. Similar to the now-popular Danish term, “hygge,” koselig means a sense of coziness. It could be part of the reason that people in Norway don’t show increased depression in winter, even though it’s cold, snowy and dark.
In Norway, “people view winter as something to be enjoyed, not something to be endured,” researcher Kari Leibowitz told Fast Company in an interview.
Skålvoll, who now lives in Germany, trains hard to participate as an adaptive athlete in competitions that test strength and endurance. She has the rare disease, alpha 1 antitrypsin deficiency, which impacts the lungs and breathing. Skalvoll has pulled a plane and can dead lift 308 pounds (140 kilograms).
But she also knows how to savor winter and likes “life in the slow lane” once in a while. That means crosswords, board games and glogg, a kind of mulled wine she describes as smooth and sweet.
“When the snow comes, it is fun and the white blanket of memories always makes me feel like a child. Of course, there is cold weather making it hard to breathe. But on those nice, crisp clear days, being out is wonderful, even better when we get back inside,” Skålvoll said. “So yes, koselig. Winter is koselig and a happy time.”
That said, if you follow Skålvoll on Instagram, you’ll see she also knows how to make great, recuperative use of a winter trip. Her destination is a warm, sunny spot by the sea.