Listening to the lived experience of EGPA

This article was provided by our partner, the American Partnership for Eosinophilic Disorders (APFED). It has been reviewed by Bionews for accuracy and relevance. The views and opinions expressed are those of the author and do not necessarily reflect the views of Bionews or ANCA Vasculitis News.

When I speak with people living with eosinophilic granulomatosis with polyangiitis (EGPA), I’m reminded again and again that this disease is about so much more than lab results or treatment plans. EGPA reaches into nearly every aspect of life, relationships, work, emotional well-being, and a person’s sense of identity.

Over the years, through conversations with patients, caregivers, and advocates, I’ve had the privilege of listening closely to their stories. While no two journeys are exactly the same, certain shared experiences recur time and again. These lived realities deserve attention, understanding, and action.

The long road to answers

One of the most common frustrations I hear is how long it takes to receive an accurate diagnosis. Early EGPA symptoms often resemble asthma or other inflammatory conditions, leading many people down a winding path of misdiagnoses, unanswered questions, and repeated medical visits. Patients frequently describe feeling dismissed or told their symptoms weren’t serious enough.

This prolonged uncertainty can be deeply unsettling. Beyond the physical toll, delayed diagnosis often leaves people questioning their own experiences and wondering whether anyone truly believes them. For many, finally receiving an EGPA diagnosis brings a mix of relief and grief at having an explanation, and grief for the years spent without answers.

The daily and emotional weight of EGPA

Living with a rare disease like EGPA can feel incredibly isolating. Because the condition isn’t widely understood, patients often feel alone, especially during flares. I’ve heard many people describe the pain of being told, “You don’t look sick,” while quietly managing fatigue, pain, or neurological symptoms.

Treatment itself can add to that burden. Steroids, particularly prednisone, are frequently necessary to control disease activity, but they come with significant side effects. People talk openly about weight changes, mood swings, insomnia, anxiety, and fear of long-term consequences. Steroids are often described as both lifesaving and deeply disruptive.

Flares can arrive suddenly and upend daily life. Work schedules change, plans are canceled, and independence may be temporarily lost. And while asthma and sinus symptoms are often the most visible signs of EGPA, the disease is systemic. Nerve pain, numbness, gastrointestinal issues, skin involvement, heart complications, and overwhelming fatigue are part of the reality for many.

The emotional toll is just as real. Anxiety about disease progression, fear of the next flare, grief over lost abilities, and emotional exhaustion are common, yet these experiences are often overlooked in clinical settings. When emotional health isn’t acknowledged, the burden of EGPA becomes even heavier.

Why listening matters

People living with EGPA consistently express a desire to be active partners in their care. They value shared decision-making, coordinated multidisciplinary teams, and clear, compassionate communication. Because EGPA care often involves multiple specialists, coordination is essential, as is effective listening.

Despite the challenges, what continues to inspire me is the resilience and hope within the EGPA community. Patients and caregivers remain optimistic about advances in research, improved understanding of eosinophilic diseases, and treatments that better reflect real-world needs. Advocacy driven by lived experience is helping to shape more patient-centered care.

EGPA is not just a clinical diagnosis; it is a lived experience. When we truly listen to those living with the disease, we gain insight that can improve education, inform research, guide policy, and ultimately lead to better outcomes. Most importantly, listening reminds patients that they are seen, heard, and valued.

For more information about EGPA, including symptoms, diagnosis, treatment options, and tips for daily living, APFED and the Vasculitis Foundation offer a free digital toolkit designed to support patients and families.