Events this May!
When people first meet Ginette Saturne, they often don’t realize that she lives with a rare neuromuscular disease. What they do notice is her calm presence, her attentiveness, and her instinct to care for others. That instinct is no surprise—Ginette is a registered nurse, a role that shaped much of her life before polymyositis changed her path.
Like many people with myositis, Ginette’s journey didn’t begin with dramatic symptoms. It began quietly—with fatigue. At first, the exhaustion was easy to dismiss. As a nurse, long shifts and tired days were nothing new. But this fatigue was different. It lingered. It deepened. And over time, it was joined by growing muscle weakness that made everyday tasks harder than they should have been.
Despite her medical background, Ginette delayed seeking care. “It took about two years to receive an accurate diagnosis,” she explains. “Part of that delay was because I didn’t pursue medical attention as soon as I should have.”
When the diagnosis finally came—polymyositis (PM)—it brought clarity, but also new uncertainty.
When myositis changes everything
Polymyositis has had a profound impact on Ginette’s life. Chronic muscle weakness and fatigue made it increasingly difficult to continue in physically demanding nursing roles. Tasks that once felt routine required careful planning—or were no longer possible at all.
The effects rippled outward. “There’s been a reduction in income, ongoing medical needs, and a greater dependence on consistent healthcare and stability,” Ginette says. Along with the physical challenges came emotional stress, as well as the constant awareness that relapse is always a possibility.
“Myositis has affected my overall quality of life,” she says simply. But she’s adapting to this new normal.
Strength through family and community
Throughout her journey, Ginette has not faced polymyositis alone. Her family has been a steady source of strength, stepping in when muscle weakness made daily tasks difficult and offering emotional encouragement when uncertainty felt overwhelming.
“They helped me cope with both the physical and mental challenges,” she says. “Their presence has given me stability and strength when I needed it most.”
Managing polymyositis requires vigilance, and Ginette credits her care team with helping her stay as stable as possible. Through coordinated treatment, regular lab monitoring, and ongoing evaluations, her providers work to control inflammation and catch flares early.
“They adjust medications as needed and guide me on managing symptoms and preventing complications,” she explains. “That ongoing support helps me maintain as much strength and function as possible—and protects my quality of life.”
As both a patient and a nurse, Ginette offers an important message for the next generation of physicians: “Polymyositis is often subtle, systemic, and easily overlooked if you rely only on textbook presentations.”
She hopes medical students and clinicians will learn to listen carefully, look beyond the obvious, and recognize that rare diseases don’t always follow neat rules.
Living wisely with limited energy
One of the most valuable lessons Ginette has learned is how to use her energy intentionally.
“Energy conservation with intentional pacing is essential,” she says. She prioritizes essential tasks, breaks activities into smaller steps, and—most importantly—rests before exhaustion sets in, not after.
Gentle, low‑impact movement also plays a role. Stretching and physical‑therapy‑guided exercises help her maintain function while honoring her body’s limits. “Listening closely to your body,” she says, “makes all the difference.”
Words of hope for others with myositis
Ginette knows how isolating life with myositis can feel, and she offers encouragement from the heart:
“Your strength is not defined by your physical ability, but by your resilience and determination to keep going—even on the hardest days.”
She reminds others that while the journey is unpredictable, no one is alone. There is community. There is support. And there is hope—even in moments of uncertainty.
“Give yourself grace,” she says. “Celebrate small victories. Adapting doesn’t mean giving up—it means continuing forward in a different, powerful way.”
Please make a gift today to help TMA support and encourage people like Ginette.
Your generosity makes all the difference this Myositis Awareness Month!
