Rachelle Gauthier's Journey: From Breathing Struggles to a Life-Changing Diagnosis
In 2019, Rachelle, a 32-year-old teacher in Edmonton, Alberta, began experiencing troubling and persistent breathing difficulties. It wasn’t fatigue; her breathing was noticeably strained, a fact her own mother and colleagues had pointed out.
Initially, she dismissed it as the rigors of teaching kindergarten, but the problem persisted. Eventually, she sought new medical advice, leading to referrals to a pulmonologist and an ear, nose, and throat (ENT) specialist.
The Search for Answers
The initial tests provided little clarity. A pulmonologist ruled out severe asthma but diagnosed mild sleep apnea, which still didn’t explain the ongoing struggle to catch her breath. “The tests turned out to be diversions from the actual issue,” Rachelle noted.
The Unexpected Diagnosis
The blood tests didn’t rule out other conditions—they revealed them. Rachelle returned for her results to hear Dr. Allegretto gently deliver the unexpected news: “You are ANCA positive, which is a blood marker for a rare disease called granulomatosis with polyangiitis (GPA).”
Rachelle had never heard of GPA. Dr. Allegretto explained that the narrowing of her airway, known as subglottic stenosis, wasn’t from old scarring but was caused by vasculitis, a disease that involves inflammation of blood vessels. While surgery could offer temporary relief for her breathing, the underlying disease needed to be treated to prevent the issue from returning.
Rachelle was quickly referred to rheumatologist Elaine Yacyshyn, MD. In September 2020, Rachelle received her definitive diagnosis: GPA vasculitis with subglottic stenosis. She found some comfort in the clarity, noting, “Honestly, I was relieved because ‘vasculitis’ was much easier to say than ‘granulomatosis with polyangiitis.'”
Beginning the Treatment Journey
Starting treatment was overwhelming at first, as Rachelle’s early rheumatology appointments often involved a full examination by a training resident before Dr. Yacyshyn went through everything again. Despite the intensity, she found comfort in Dr. Yacyshyn’s clear and reassuring communication.
Over time, they established a multi-faceted treatment plan that began with azathioprine (Imuran®) in December 2020, which she tolerated well without significant side effects. Since 2022, she has also received Ruxience® infusions every six months, experiencing mainly tiredness on infusion days. To offset the risks associated with immunosuppression, a low-dose antibiotic was added to her regimen.
Prednisone was part of her therapy from 2021 to 2024 and proved particularly challenging, leading to weight gain, night sweats, brain fog, and mood swings—side effects she described as “overall awful.” Coming off prednisone became a major milestone, marked by a celebratory high-five from her doctor. Because airway narrowing remains a significant concern, Rachelle undergoes regular laryngoscopy and bronchoscopy surgeries roughly every six months to temporarily widen her airway, procedures she said offer “almost instant relief.” The long-term hope is that effective medical management will eventually reduce the need for such frequent surgical interventions.
Life Turned Upside Down
Vasculitis forced a complete shift in Rachelle’s life. In June 2022, she made the difficult decision to leave her teaching career, as being immunosuppressed made her constantly ill. She transitioned to a team-lead office role, which has proven much more manageable for her health.
Her condition dictates the pace of her life. She can go for months living “a pretty normal, active life.” However, when a flare-up necessitates surgery, “daily activities become so much harder.” The mental and emotional adjustment was heavy, leading her to take an antidepressant for several years, though she has since tapered off. “I’m doing well overall now, but I still have some hard days,” Rachelle shared.
Life Today: Love, Community, and Perspective
Just a month after her official diagnosis, Rachelle met her now-husband, JD, who has become her biggest support. They married in June 2024 and share their life with a corgi and two cats. Rachelle remains a person of wide-ranging passions, including yoga, swimming, reading, and various arts like crochet and painting.
Her robust support system has been crucial. “My amazing husband has been the biggest support, right by my side, for all the ups and downs,” she said. Her family and friends are loving, and her sister even created an infographic to help Rachelle explain vasculitis to others.
Rachelle also found community through resources like the Vasculitis Foundation, its podcast, and virtual support groups. She even reconnected with an old friend who has Behçet’s disease, providing a unique sense of understanding.
Finding Balance and Moving Forward
Rachelle has learned to navigate her condition with endurance and self-kindness. During flare-ups, she slows down, asks for help, and schedules her next ENT appointment. When feeling well, she prioritizes movement—walking, swimming, dancing, and yoga.
Living with vasculitis has deepened her gratitude and empathy, giving her a new perspective on life. She and her husband make a point of planning fun trips and activities when she’s healthy, ensuring they always have something to look forward to. Her personal mantras reflect this resilience: “It’s not a sprint, it’s a marathon” and “All I can do is the next right thing.”
Rachelle hopes for a future where her disease is more manageable, surgeries are less frequent, and life holds more room for joy and adventure.
Rachelle’s Advice to Others with Vasculitis
“First and foremost, be kind and gentle with yourself—you can do hard things. Reach out to support groups. Ask lots of questions. Know that vasculitis can look different for everyone, and that’s okay—you can still learn from others. And do your best to ask for help and rest when you need it.”