Imogen Phillips: A Young Woman’s Journey with Vasculitis
Hailing from Perth, Western Australia, Imogen’s life, like many young adults, was once filled with dreams of sports and music. However, a battle with a rare disease has since reshaped her path, teaching her the importance of hope and gratitude. At just 19 years old, Imogen radiates with an enthusiastic and courageous spirit.
Living with Granulomatosis with Polyangiitis (GPA)
Imogen lives with granulomatosis with polyangiitis (GPA), a form of vasculitis that causes inflammation of the blood vessels. For six months, her health steadily declined with symptoms that included joint pain, frequent nosebleeds, a loss of 15 kgs, and coughing up blood. “I had a lot of misdiagnoses,” she recalled, a common experience for those with rare diseases. It was only after her mother requested a second opinion that a rheumatologist finally diagnosed her in April 2025.
Receiving the diagnosis was just the beginning of a difficult journey for Imogen. The treatment process, which involved blood tests, biopsies, and swabs, confirmed she had a severe GPA case. At the time, she was in her final year of high school.
The physical challenges of the disease—including chronic nausea, headaches, and extreme fatigue—have forced her to put her aspirations on hold. Once an avid hockey player with Olympic dreams and a talented musician, Imogen now finds it challenging to maintain her active lifestyle. “Most days I can’t do much at all,” she said. When a flare-up occurs, the severity of her condition means she often has to be admitted back to the hospital.
Coping with Severe Symptoms and Hospitalization
One of Imogen’s more challenging symptoms was a severe mouth condition called acute necrotizing ulcerative gingivitis, sometimes referred to as “trench mouth.” The infection caused extreme pain and bleeding in her mouth, making it difficult for her to eat and talk.
The disease has also taken a toll on Imogen’s mental and emotional health. “I find it hard to relate to others my age,” she said, a sentiment many young patients can relate to. The trauma of Imogen’s diagnosis and hospitalization has left her with ongoing depression and anxiety. She has also had to deal with the loss of friendships, as it’s hard for her friends to understand why she often can’t go out or do things with them.
Imogen’s diagnosis came just in time. When she was admitted to the hospital, she had hemorrhages in her lungs and was coughing up a lot of blood. Doctors told her mother she was only 30 minutes away from dying. Imogen was placed in a medically induced coma. “I was honestly at peace with it,” she said. “I don’t remember a lot, but I wasn’t scared at that point.”
Support, Community, and Hope
Despite these immense challenges, Imogen remains hopeful. She is grateful for her strong support system, particularly her mother, who was a constant presence by her side. “My mum never left me alone when I was scared,” Imogen said. “She slept with me every single night I was in the hospital and helped me through every procedure and still does! I’m very grateful to have my mum.”
Imogen has also found a community of understanding individuals through an Australian and New Zealand vasculitis Facebook group. “I find them a great support system and learn a lot through them as well as my specialists,” she explained. Connecting with others her age, who have the same condition, has been a great source of comfort, helping her feel less alone.
Her experience has profoundly changed her perspective on life. “Now when I wake up in the morning, I am so thankful to be alive and out of the hospital,” Imogen said. “I also appreciate little things a lot more.” She finds joy and a sense of purpose in music and art and looks forward to a future where she can work with children as a primary school teacher.
When asked what advice she would give to someone newly diagnosed with vasculitis, Imogen’s message is simple yet powerful: “Just be grateful and hopeful. Everything will get better.”
