The Importance of Early Diagnosis: An Experience with GPA
Ashley Fry’s illness began with something as common as sore gums. But what started as simple discomfort soon escalated into bleeding gums and oral lesions that rounds of antibiotics, nasal sprays and steam therapy couldn’t fix.
“Brushing my teeth was like a scene from a body horror flick,” The 35-year-old said. “It got to the point where I couldn’t breathe out of my nose at all, and I felt depleted of energy.”
Ashley, who lives in Philadelphia, soon made an appointment with Marc R. Rosen, MD, an otolaryngologist at Jefferson Health in Philadelphia, who was familiar with granulomatosis with polyangiitis (GPA).
“He took a nasal biopsy that first visit and moved quickly with ordering blood tests and scans, which led to almost unheard-of early diagnosis and treatment,” Ashley said.
She was diagnosed at the end of December 2023, after only one month of quickly escalating symptoms. Although there was concern about surgery for damage to her nasal structure, prompt treatment prevented the need.
GPA is a form of vasculitis that can restrict blood flow and damage vital organs and tissues. GPA typically affects the sinuses, lungs, and kidneys but can involve any organs. GPA can worsen rapidly, so early diagnosis and treatment are essential to prevent organ damage or failure.
Before her diagnosis, Ashley never heard of vasculitis. “Vasculitis and particularly GPA were foreign to me and not on my radar,” she said. “No one in my family or circle had it and it just wasn’t something that came up in my conversations prior to being diagnosed.”
Since her vasculitis is under control and she’s symptom-free, Ashley’s current challenge is dealing with an unknown future.
“I’m optimistic, but GPA feels like this dark and looming hidden phantom that could reappear at any time down the road,” she said.
Her treatment involves ongoing medication, though she’s uncertain about the potential side effects of long-term use. Ashley is currently on azathioprine and also was on prednisone for about six months. What gives Ashley hope is that she has lots of love and authentic, close relationships in her life.
“My loving, caring and funny boyfriend, amazing family and friends – and pets – bring me light and plenty of laughter,” she said.
In addition, Ashley works in nonprofit fundraising for cancer research and is “grateful to work in a cause-driven sector, connecting passionate philanthropists and brilliant researchers who make an impact in the cancer community.”
She also recently reconnected with creative outlets like writing, music and photography, which help keep her in tune with herself and exercise different ways of looking at the world around her. For others who are looking for ways to cope with their vasculitis journey, Ashley believes that it’s important to be kind to yourself – it’s easy to be self-critical.
“Give yourself grace during down times and slower periods. Needing time to heal is not a weakness,” she said. “Try to avoid comparing yourself to others or to a previous version of yourself (thinner, more energetic, etc.). Healing the body is connected to healing the mind.”
What Ashley took away from her diagnosis was the importance of listening to your body, acknowledging when something feels off and seeking help quickly.
“It’s so important to advocate for your health and well-being, and to have a support system along the way,” she noted.
Ashley feels fortunate to have seen Dr. Rosen, who knew the signs and acted quickly.
“Prompt medical attention is key for anyone with vasculitis. Physicians and medical professionals should have standard practices of prompt testing, even if just ruling out,” she said. “I’m incredibly lucky and blessed to have seen Dr. Rosen of all doctors. It feels like the stars really aligned for me to be seen by a doctor who was able to catch this thing before it wreaked true havoc.”
Ashley feels privileged with access to quality care, information and resources, and an awesome care team.
“I often wonder if I were from another country, another community or had different insurance coverage, would I have been as fortunate as I am today,” she said. “These factors should not be what determines the outcome of someone’s health trajectory.”
