Rosy Thomas’s Vasculitis Journey of Strength, Spirit, and Survival
In the quiet town of Temuka, nestled in South Canterbury, New Zealand, lives Rosy Thomas—a woman whose life story is anything but quiet. Curious, intelligent, and stubborn in all the best ways, Rosy has weathered a storm she never saw coming—granulomatosis with polyangiitis (GPA), a rare autoimmune disease affecting her small blood vessels, combined with Raynaud’s disease and MPO positivity—a rarer form of antibody profile in GPA vasculitis.
“It worried me at the start, being diagnosed with two vascular conditions,” she recalled. “My specialist, nephrologist Dr. David McGregor, explained GPA affects my small blood vessels and Raynaud’s my arteries.”
Early Symptoms and Misleading Signs
Rosy’s diagnosis came in July 2022, but her story began months earlier with what seemed like a simple cough. Initially, she chalked up her cough to breathing in spices while making pickles. But the symptoms didn’t stop. “The cough never really went away and progressed to coughing small amounts of bloody phlegm,” she said. “Then strange things started happening—swollen glands, joint pain, earaches, sinus issues, bleeding from the nose. It was like my body was giving me clues, but I couldn’t read the message.”
She brushed off many of the early signs—pain that came and went, headaches, fatigue, breathlessness, even a blue-mottled appearance of her skin in a hot bath, which turned out to be COVID-19. Still, Rosy kept going—working outdoors in the cold, pushing through each day. But eventually, her body forced her to listen.
Diagnosis and Hospitalization
“When they said I had to be rushed to the kidney ward, I was beside myself,” Rosy remembered. “As I packed my bag, my nose bled uncontrollably. It was horrifying.” Unbeknownst to her, Rosy’s kidney function had dropped below 15%. A CT scan revealed masses and ground glass nodules in her lungs, and autoimmune blood work confirmed what her body had been trying to tell her—she had vasculitis. Rosy was admitted to Christchurch Kidney Ward where specialists began treatment before even confirming the diagnosis via biopsy.
“One of the kindest things anyone said to me at that time,” Rosy shared, “was from the lead nephrologist. ‘This is not your fault. You have done nothing wrong.’ Those words helped me move forward without blame.”
Treatment and Recovery
Rosy responded well to a combination of cyclophosphamide, prednisone, and eventually mycophenolate, which helped her stay in remission. She’s grateful for her medical team—her GP, local consultants, and the nephrology specialists at Christchurch—and especially proud of how she advocated for herself by connecting the dots with her Raynaud’s history, which led to autoimmune testing.
The first year post-diagnosis was brutal. She lost muscle, energy, and hair. “I was devastated,” Rosy said. “The hair was the last bit of ‘me’ I felt I had left. Prednisone made my face puff up, I had no neck, and I couldn’t recognize myself. But I was alive—and I clung to that.” Bit by bit, she began to rebuild.
“I started walking again soon after I left Christchurch Hospital. At first, it was hard, pushing through the fatigue and the aches. But I had this feeling that blood flow and movement could help me heal. I even found videos by Dr. Eric Gapud from Johns Hopkins that gave me hope I was on the right path.”
Finding Strength Through Lifestyle and Mindset
With a job that kept her physically active and her faithful German Shepherd pup, Charlie, by her side, Rosy made it her mission not just to survive—but thrive.
Rosy’s journey is powered by more than medication. It’s sustained by mindset, research, music, and motion. “That first year, I became one of the top 0.01% of Spotify users for Chopin and Ultravox,” she laughed. “Chopin helped me sleep. I also kept a daily journal, writing down my fears, frustrations, and everything I couldn’t say out loud.”
Her mental resilience came from two decades of being a single mother to three now thriving young adults—a chemist, a future doctor, and a creative bright spark. And now, she finds purpose in marathon walking, competing in the Dunedin and Christchurch marathons annually, often finishing in the top 15%. “I’ve completed multiple 10km and five 21km walks. These became my goals after getting out of hospital. I wanted to do something I’d never done—and now, I can’t stop.”
Thriving Despite Challenges
Rosy credits exercise, Mediterranean-style eating, and a refusal to give up as her lifelines. But she also acknowledges the complexity and unpredictability of autoimmune disease. “People look at you and think you’re fine. They don’t understand how life-threatening vasculitis can be. I stopped explaining it a long time ago. I know what it is. I know the risks.”
In August 2025, Rosy celebrated a major milestone—discontinuing immunosuppressant treatment after two years without relapse. It was a moment of profound victory.
To newly diagnosed patients, Rosy offers both practical and emotional guidance: “Use a notebook to track your questions for your specialist and any symptoms. Don’t be afraid to talk to your GP or a mental health professional. Hold onto hope—and do something each day that reminds you of who you were before this disease.”
“Keep doing what makes you feel alive. Even if it’s small. A breath, a walk, a piece of music. You’re still here—and that means everything,” she added.
Inspiring Others and Looking Ahead
Rosy hopes to talk to medical students about vasculitis and how easily it can be missed. She also dreams of writing a book about her journey, blending poetry and storytelling. “I know I have vasculitis—but I have my life, and I love it. Simple, quiet, and mine.”
She signed off with the mantra that has carried her through every flare-up, marathon, and sleepless night: “If you look, you can always find the sun. It is always there.” And indeed, Rosy Thomas is still here—walking toward it.
