A Pompe patient’s journey to becoming Ms. Wheelchair Alaska

“The Pompe Community Diaries” is a series that follows the journeys, musings, and challenges of those in the Pompe disease patient community. This week, I’m introducing Katy Arvidson, who is the current Ms. Wheelchair Alaska USA.

Katy is wheelchair- and ventilator-dependent because of Pompe disease. She lives in Eagle River, Alaska — a suburb of Anchorage — with her husband and two Newfoundland dogs. For Katy, the crown is a recognition and continuation of her advocacy for disability rights and mental health.

In the mid-1980s, when Katy was 10 years old, she was diagnosed with Pompe disease after three years of intense and painful medical testing. Back then, there was no treatment and little to no information available about Pompe. Katy’s doctor told her she should eat candy or sweets if she felt tired.

“Of course, that’s the complete opposite of what Pompe patients should do,” Katy told me during a video chat. “We can’t process complex sugars, but that example gives some idea of the lack of information back then. There was really no help for me at that time, so I had no choice but to move on living my life without taking into consideration the impact Pompe was having on my body.”

Recommended Reading

January 10, 2025 Columns by Anthony Wu

How we’re constantly learning about the Pompe diet and exercise

When Katy was in her mid-20s, 16 years after her diagnosis, she got into the first clinical trial for the drug alglucosidase alfa, now approved in the U.S. and known by its brand name Lumizyme.

Katy Arvidson was crowned Ms. Wheelchair Alaska USA in October 2024. (Courtesy of Katy Arvidson)

“During my college years, I started having severe pain climbing stairs. I was never very athletic and my balance wasn’t great, but now I was experiencing exertion-based pain. And my hip flexor issues started,” Katy said.

“When the clinical trials began a few years later after college,” she continued, “I remember flying back and forth between Alaska and New York City every two weeks for over three years. It was a long routine: pack suitcase, fly in the day before infusion, fly home, unpack suitcase, wash clothes, go to work, repack suitcase, repeat the three-day trip every other week. All I could do was keep moving and keep going.”

Katy has a master’s degree in social work, but had to leave the workforce when her symptoms became more challenging. “It was a loss for me when I could no longer do my work. It was very meaningful work for me,” Katy said. “Our bodies keep changing. When you lose the ability to do more and more things over time, and as I became more dependent on the wheelchair, it becomes more isolating. Friends and people I love have to come see me, which is tougher.”

In October, Katy was crowned Ms. Wheelchair Alaska. This July, she’ll travel to Ohio to represent Alaska in the Ms. Wheelchair USA national competition. Her pageant platform, “Moving Past Surviving to Thriving,” focuses on mental health advocacy for people with disabilities.

“It is wonderful to meet all the other women,” Katy said. “Everyone has their stories and journeys, but everyone also has their own different, special abilities and capabilities.”

Katy has a lot planned in the coming months, which I’ll share in future columns tracking her journey.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.