MyoCon! Rate increases on August 28th!
By Theresa Curry
As she approached midlife, Jenni-Leigh Girard was still growing and learning, but she had already done more than most of us do in a lifetime. She was a professional dancer, actress, and model; an accomplished horsewoman and riding instructor; and a talented yoga teacher who trained other yoga teachers. Embracing yoga as a tool for healing, she also established a wellness practice. She is also an artist who currently works as an art director. In her spare time, she hiked, rock-climbed, and surfed.
Her friends and colleagues used to tease her, asking, “What don’t you do, Jenni?”
Her life, so full of physical activity and creativity, changed in January 2025 when she became desperately ill. Jenni, 53 at the time, first thought she had a cold, but soon realized it was something much worse. After losing her voice and enduring multiple doctor, urgent care, and emergency room visits, she was admitted to Guelph General Hospital in Ontario, where an ER physician correctly diagnosed her.
It was a scene she’ll never forget. He ran tests, then wrote one word on a piece of paper: “Dermatomyositis.”
“Find out everything you can about this,” the doctor said. “I’ll be back.”
He did come back, and the news wasn’t good. Tests showed sky-high inflammation that, along with characteristic skin signs, confirmed the diagnosis. Jenni-Leigh was admitted that night and spent two weeks in the hospital. After two weeks at home, she was readmitted with dysphagia so severe that she lost 30 pounds in six weeks and could tolerate only a liquid diet for nearly six months. When her myositis blood panel came back, she learned she also had Sjogren’s disease.
It was as though someone had stolen her strong body and replaced it with one consumed by inflammation and weakness.
All of this was an enormous emotional and physical challenge. But Jenni-Leigh had a bit of a head start. Her breathwork and mindfulness practice helped. Her training in mental wellness helped. Even her love and care for horses helped. The animals she trained to comfort others now supported her, offering the steady presence nature provides, without judgment or expectation.
Still, she said, she has learned a great deal since then.
“It was really helpful for me to have a sense of control,” she said. “One of the best things you can do for your mental health, as well as your overall health, is to be an advocate. Speak up. Ask questions. Search for better information.”
She also had to learn something that did not come easily. Used to a high-energy life, she struggled to listen when her body begged her to rest. In addition to breathwork and meditation, she developed ways to manage stress, beginning with acknowledging her losses.
“I realized that I couldn’t just ignore every bad feeling,” she said.
Rather than denying feelings of loss, anger, and fear, she allows herself to feel them. And she connects with others living with chronic disease through TMA Support Groups and social media. That connection has helped not only as a way to process emotions, she said, but also to learn what to expect from DM.
Another tool that helps is keeping a careful daily record of symptoms, progress, mood, what worked and what didn’t. It gives her a clearer picture of her condition, rather than relying on memory.
She is still trying to make sense of it all. As a child, she had juvenile rheumatoid arthritis, and her mother died of lupus, so she was familiar with autoimmunity. And as someone who worked in healing, she understood the importance of connection—with family and friends she cared about, and who cared about her.
Those connections came through. “I’ve always felt loved,” she said. “But it can’t be all one person.”
She found that different people offered her different kinds of support: non-judgmental listening, practical assistance, and gentle reminders to be positive.
After multiple interventions, including medication, speech therapy, occupational therapy, and physical therapy, Jenni-Leigh was nearing remission in the final weeks of 2025. But three weeks after her last IVIG infusion, she began to show signs of a serious flare and has since resumed treatment.
Jenni-Leigh believes everything she has learned and experienced has prepared her for this moment, not only to cope with her disease, but to be a source of light and hope for others. She shares words of support and reflections on living with a chronic disease, accompanied by gorgeous illustrations, across several platforms.
“I’m ready to step into a role of advocacy and awareness for DM and rare diseases,” she said. “If I can no longer have a strong body,” she added, “then this is my hope—to be a positive voice.”
Find more about mental health and myositis in the Summer 2026 issue of The Outlook.
