For many people living with a malady, a diagnosis often signifies the end of a metaphorical tunnel, and that relief is surely on the way. But what if a diagnosis was only just the beginning? For people living with granulomatosis with polyangiitis (GPA) or microscopic polyangiitis (MPA), two types of ANCA-associated vasculitis (a group of rare autoimmune diseases), part of the patient experience is a long and challenging path to diagnosis and a potentially lengthier road to identifying adequate treatment. And in between those two milestones, the path is fraught with methods of trial and error, often with numerous misdiagnoses and improper treatment. Nicole, a Texas resident and mom of two fur babies, shares her incredible 19-year journey with a GPA diagnosis from symptoms to control and how she learned that sometimes the most important voice is the one within yourself.
2003–2005: From Presumed Seasonal Allergies to a Rare Disease Diagnosis
One day, Nicole developed an irritating, burning cough that wouldn’t let up. “It wasn’t anything I’d experienced before and couldn’t be easily explained,” Nicole said. Her doctor insisted it was just a recurring sinus infection or seasonal allergies, and yet the prescribed antibiotics had little to no effect on her symptoms. Weeks turned into months, and months turned into a year and a half, and Nicole reached her breaking point. She was experiencing constant nosebleeds, sinus infections and low-grade fevers and despite being only in her 30s, she struggled to find the strength to do routine activities without feeling winded.
In April of 2005, Nicole finally decided to go to the emergency room after she found herself coughing up blood. “That started the process of extensive labs and me just spilling my guts to the poor emergency room doctor because I’d had so many seemingly random symptoms for so long,” said Nicole. “But I’m so glad I did, because what felt random to me, made them consider I could be dealing with something systemic.”
Within a matter of weeks, a lobectomy and pathology report revealed a positive granulomatosis with polyangiitis (GPA) diagnosis.
“Throughout the process, you keep thinking you’re going to get better or you’re blowing things out of proportion, but I knew I wasn’t,” said Nicole. “Thank goodness I went to the emergency room, because I could not physically have gone on much longer.”
2005–2024: Two Decades of a Relentless Pursuit of Care
After Nicole’s diagnosis, a milestone that should have brought comfort, she began a nearly two-decade long journey to find adequate treatment for her disease. She, along with her doctors and specialists, entered a seemingly endless cycle of treatment trial and error, starting and stopping various rounds of glucocorticoids, also known as steroids, immunosuppressants and chemotherapy to manage her condition.
Nicole experienced nearly constant disruption to her life because of the efforts required to manage GPA. Perhaps the most frustrating and heart-breaking obstacle for Nicole was the loss of her ability to have biological children due to the chemotherapy treatments, which had caused infertility. Nicole encourages women who are of childbearing years and about to embark upon chemotherapy to consult a doctor about egg freezing or embryo banking – an option that was not available to her 19 years ago.
However, not all hope was lost during this time. In fact, her journey led her to unexpected places and welcomed her into new communities. An avid viewer of “Mystery Diagnosis”, a television show featuring patients who share their challenging diagnosis stories, Nicole felt compelled to submit her own story which, when aired, was met with a wave of outreach from those who related.
Nicole said, “I was so grateful to be able to raise awareness because it was alarming how little was known about MPA or GPA, given they are such serious diseases.” She continued, “People reached out to me saying that the show was beneficial and let their friends and family have a different outlook on their condition.” The experience was inspiring for Nicole and brought her closer to the vasculitis community, which changed her perspective by showing her, shockingly, how many people understood her situation.
January 2024–Present: Achieving Control and Retrospection
Nicole’s antibodies finally tested negative in January 2024, and while she still regularly takes immunosuppressants, she has obtained control of her disease. If there’s anything Nicole has learned 19 years after her diagnosis, it’s to find your voice throughout the process and the importance of being a self-advocate. “The patient shouldn’t sit back and wait for answers to come to them,” said Nicole. “There’s so much access to information, and if you want to have the best outcome and feel as well as possible, you owe it to yourself to be as involved as you can.”
To learn more about ANCA-associated vasculitis and find support, please visit ANCA101.com.
