(BPT) - When Stacy felt a familiar pain return to her arms, fingers and wrists, she knew something wasn't right.
Her bloodwork, however, told a different story. At a routine appointment, the results showed no warning signs. But Stacy, who had been diagnosed years earlier with a rare autoimmune disease called ANCA-associated vasculitis (AAV), spoke up.
"I've learned to trust my gut," Stacy says.
Additional testing confirmed what she suspected: Her AAV was active again.
For Stacy, the experience reinforced a lesson she had learned over years of navigating a complex and potentially serious disease: You know your body, and when something feels different, it's important to speak up and take an active role in your care.
Finding Answers for a Rare Disease
Stacy's health journey began in 2015, when a sudden pain in her joints quickly spread throughout her body. At first, she wondered whether stress or aging could be responsible. But as the symptoms persisted, she felt strongly that something more was happening.
After visits with several doctors and multiple rounds of testing, Stacy was diagnosed with granulomatosis with polyangiitis, or GPA, a form of AAV.
AAV is a group of rare autoimmune diseases characterized by inflammation in small- to medium-sized blood vessels. Because blood vessels are found throughout the body, AAV can restrict blood flow and impair the function of multiple organs, including the kidneys and lungs. Symptoms can vary greatly from patient to patient, which can make the disease difficult to recognize or diagnose.
Although receiving the diagnosis was difficult, finally having an explanation for her symptoms also brought Stacy relief. She could work with her doctors on a care plan, and within 18 months, she entered remission.
For several years, her disease remained under control, but the doctors warned her that eventually she could have a relapse.
Learning to Trust Herself
When Stacy's symptoms returned in December 2023, speaking up proved especially important.
After additional testing confirmed her AAV was active again, Stacy resumed her treatment plan.
Just two days after that appointment, Stacy was walking down the stairs at home when her pulse began racing and she suddenly couldn't catch her breath. She was admitted to the hospital, where doctors discovered she was bleeding into the air sacs of her lungs and that her kidneys were rapidly approaching failure. It was a severe relapse, and a turning point in how Stacy viewed her disease.
The experience reinforced for Stacy how serious AAV can become and the importance of continuing to raise concerns and ask questions when something doesn't feel right.
Becoming an Active Partner in Your Care
Today, Stacy's care involves several specialists. Navigating that complexity has taught her that advocating for yourself doesn't mean having all the answers.
For Stacy, it means asking questions when she doesn't understand something, requesting explanations in plain language and bringing her husband to appointments as another set of ears.
Stacy took an active role in building her care team and encourages the physicians involved in her care to communicate directly with one another.
"If a doctor doesn't respond well to you asking questions, asking why a certain treatment is being recommended, then that's not the doctor you want," Stacy says.
Most importantly, she has learned not to dismiss her own concerns.
"I've stopped accepting the word no," Stacy says. "At some point you realize you must stand up for yourself, because if you don't, nothing's going to move forward, and I am worth the hassle."
For people living with AAV, or any rare disease for that matter, Stacy's experience offers a reminder: Learn about your disease, pay attention to changes in your health, ask questions and feel confident speaking up with your care team.
To learn more about ANCA-associated vasculitis and get access to helpful tools and resources, visit the ANCA Resource Hub.
