For the past two years, multimedia journalist and producer Lindsay Guentzel has been learning what it means to live with Dermatomyositis, a rare and incurable autoimmune disease. Unlike many who spend years searching for a diagnosis, she received answers relatively quickly—but managing the condition has been anything but straightforward. Her journey began in January 2023, during a hike in Sedona, Arizona. A few cactus spines in her leg led to an infection, setting off a series of unexplained symptoms—swelling, muscle weakness, and fatigue.
After weeks of doctor visits and extensive testing, she was diagnosed with Dermatomyositis associated with Antisynthetase Syndrome in March 2023. The disease causes inflammation in the muscles and skin and can also impact the lungs, liver, and other organs. According to data from the National Organization for Rare Disorders (NORD), most people with a rare disease wait an average of 5 to 7 years before receiving an accurate diagnosis. Lindsay received hers in just two months. "Looking back through my medical records, it's clear there were so many people going to bat for me behind the scenes," she said. "I was fortunate that we figured it out quickly, and we started treatment right away."
She credits her quick diagnosis to the thorough, collaborative care she received at Hennepin Healthcare, where her medical team worked across specialties to piece together her symptoms and find answers faster than is typical for a rare disease. By spring, they had a treatment plan in place, and for a few months, the disease was relatively stable. But in August 2023, things changed. A severe flare-up led to an 18-day hospitalization at HCMC in September and another six-day stay in November. The cause? A rare and unexpected reaction to one of her medications—one that was meant to help manage her condition but instead triggered a significant setback. "It was frustrating," Lindsay said. "We had made so much progress, and suddenly, everything was back to square one. But at least we had answers, and that allowed us to adjust my treatment moving forward."
A Medical Team That Made All the Difference
Through every stage of this journey, Lindsay has relied on the expertise and dedication of her care team at Hennepin Healthcare, especially her rheumatologist, Dr. Linh Ngo. "I truly don't know where I'd be without Dr. Ngo," she said. "From day one, he has been in my corner, constantly problem-solving, adjusting my treatment, and making sure I feel heard. He's not just my doctor—he's my advocate. And knowing I have that kind of support makes all the difference." Her team has worked tirelessly to fine-tune her treatment plan, finding a balance between medications, regular infusions, and physical therapy while carefully monitoring for further complications. "Lindsay is mentally and physically tough," shared Dr. Ngo. "Those characteristics worked well in her favor. Her disease affects approximately fewer than 200,000 people in the United States. To be affected by such a rare disease can be daunting, as proven treatments are sparse. Support for patients is sparse. We are fortunate that Lindsay responded well enough to her treatments, which enabled her to be the voice of support for others in a similar clinical situation. I am so fortunate to be a part of her care team and story."
"I am incredibly grateful for the care I receive at Hennepin Healthcare," Lindsay said. "I know that not everyone with a rare disease has access to the kind of coordinated, patient-focused care that I do. It's something I don't take for granted."
Turning Advocacy Into Action
As a journalist and producer, Lindsay has used her skills to turn her personal experience into advocacy, raising awareness about dermatomyositis and the challenges of navigating life with a rare disease. Through speaking engagements, writing, and digital content, she shares her story to help others feel less alone and to push for better resources, research, and understanding. Now, her advocacy work is gaining national recognition. In February 2025, she will speak at the National Rare Disease Day event at the National Institutes of Health in Bethesda, Maryland, where she will share her experience and insights on living with a rare, incurable condition. (Update: this event has been postponed.) "Living with a rare disease is overwhelming at times," Lindsay said. "But I know how important it is to use my voice—not just for myself, but for the entire rare disease community." (Lindsay talked about this on WCCO Radio 2-10-2025.) Two years in, Lindsay continues to adapt, advocate, and use her background in media to elevate conversations around chronic illness and rare disease—one story at a time. And behind every step forward is her dedicated team at Hennepin Healthcare, whose expertise and support have made this journey a little easier to navigate. Lindsay talked about her healthcare journey with WCCO Radio on 2-19-2025.
