Katy Arvidson is no stranger to challenges, resting on a hospital bed in a bright yellow room at Providence hospital in Anchorage, Alaska, as she navigates life with Pompe Disease, a rare form of degenerative muscular dystrophy.
Suffering from limited respiratory function, Arvidson relies on a white and blue plastic respirator to assist with her breathing as she prepares for a lengthy 4.5-hour enzyme infusion—a treatment she has undergone biweekly for fifteen years.
Reflecting on her journey, Arvidson recalls walking with a cane when she first began her treatment.
“One of the troubles of having Pompe Disease is that my respiratory function is significantly limited,” she stated, emphasizing the harsh realities of living with a degenerative condition.
Now confined to a wheelchair, the loss of abilities continues to weigh heavily on her.
“It’s sort of an unending experience of having to let go of things, and it never stops,” Arvidson said.
Gripping the moments of the past, she often finds herself looking back and realizing, “Wow, I could do that two years ago. I can’t do that anymore.”
Despite the challenges, Arvidson is channeling her personal experiences into advocacy, eager to support others coping with disabilities and mental health issues.
In February, she emerged victorious in the statewide competition to become Ms. Wheelchair Alaska USA, promoting mental health awareness as part of her platform.
She actively discusses disabilities and mental health on social media, recognizing the lack of nuanced representation and awareness, particularly for rare diseases like Pompe, which only affects approximately one in 18,700 births.
Arvidson’s outreach extends beyond social media; she volunteers with Alaska’s Disability Law Center and the Stone Soup Group of Anchorage, providing support to families with special needs children.
As she prepares for her journey to the national Ms. Wheelchair USA pageant in Ohio this July, Arvidson reflects on the significance of her role as an ambassador for individuals with disabilities.
The pageant, founded by Lowery Lockard, aims to combat the prejudice and discrimination faced by women with disabilities through a platform that merges empowerment with glamour.
Lockard expressed the inspiration behind the event, saying, “How cool would that be to present women with disabilities in this arena that’s so glamorous, so exciting, so empowering, all of these things.”
Originating as a statewide pageant in Ohio in 1996, it later evolved into a national competition celebrating women of all ages, without the inclusion of traditional beauty pageant aspects like swimsuit competitions.
Notably, contestants of all ages are welcome, with a 74-year-old woman recently achieving runner-up status.
Advocacy platforms, central to the pageant queens’ responsibilities, contribute significantly to their reign.
Last year’s winner spotlighted accessible playgrounds, illustrating how the crown can facilitate compassionate conversations about serious topics.
Lockard pointed out, “When somebody has a question, they may feel more comfortable asking a princess.
I think for kids, especially, it’s like, ‘Yo, it’s a real princess.’ It changes the atmosphere when people are talking about things that are very serious.”
Arvidson embraces this opportunity, using her crown and sash to address critical issues surrounding mental health and disability.
“I want to talk about what it’s like to have a degenerative disorder that ends you up in a wheelchair and has such an impact on your mental health,” she explained.
Having faced her own battles with depression, including multiple hospitalizations due to suicide attempts, Arvidson acknowledges her struggle has provided her with a profound understanding of the intersection between disability, access to healthcare, and mental well-being.
“I’ve been in a really good place right now,” she expressed, crediting significant changes since the onset of the COVID-19 pandemic.
During that time, her government insurance started covering virtual therapy sessions, making mental health care accessible once again.
In-home care coverage has also allowed her to remain active during the day, even when her husband is at work.
With her newfound advocacy role, Arvidson has joined a community of like-minded women from previous Ms. Wheelchair USA contenders.
“It’s pretty powerful and profound to hear other women speaking out about similar things, everything from ‘How do you have sex with your husband because you’re disabled?’ to ‘How do you meet with legislators to talk about policy?’” she shared.
While she forms bonds with her fellow contestants, this sense of unity also comes with competition as they prepare to vie for the title of Ms. Wheelchair USA in July.
Despite the competitive atmosphere, Arvidson remains focused on spreading awareness and creating a positive impact within the community.
Her journey showcases not only the struggles of living with a rare degenerative disease but also the power of advocacy, resilience, and unity among individuals with disabilities.
image source from：https://alaskapublic.org/news/health/2025-04-24/ms-wheelchair-alaska-usa-uses-her-platform-to-talk-frankly-about-disability-and-mental-health
