Using the spoon theory to manage my energy with chronic illness

Following allegations of manipulated data in its regulatory application, a division of the U.S. Food and Drug Administration (FDA) has proposed withdrawing Tavneos (avacopan), an oral treatment approved for the most common forms of ANCA-associated vasculitis (AAV), from the market. In a press announcement, the FDA’s Center…

Blood levels of transferrin (Tf), a protein that transports iron in the body, may serve as a useful biomarker for tracking the activity, treatment response, and outcomes of ANCA-associated vasculitis (AAV). That’s according to a new study by researchers in China that found that individuals with active AAV had…

Living with ANCA-associated vasculitis often feels like a constant negotiation with our own bodies. Some days, our bodies are unpredictable, unreliable, or even working against us. Pain, fatigue, breathing challenges, and mobility changes make it difficult to feel at home in our own skin. But sometimes, during quieter moments,…

Updated criteria for classifying ANCA-associated vasculitis (AAV) in adults better discriminate between the AAV types granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA) in children than the current pediatric classification criteria. That’s according to a study comparing classification results of 574 children between the…

Treatment with Nkarta’s lead candidate NKX019 in two ongoing, early-phase clinical trials may soon be available in outpatient settings — potentially expanding access for people with ANCA-associated vasculitis (AAV) and other autoimmune disorders — thanks to a new regulatory nod. The company announced it has reached an agreement…

We need to talk about fatigue again. After my recent column about the different types of fatigue, I heard from many of you through comments, emails, and shared personal journeys, all saying the same thing: This part is hard. And it doesn’t get talked about enough. I wish I…

The time it takes to diagnose ANCA-associated vasculitis (AAV) may be influenced by disease type, organ involvement, and the medical specialties consulted, according to a single-center study in Germany. The longest median time to diagnosis was seen in people with eosinophilic granulomatosis with polyangiitis (EGPA), the rarest type…

Although long-term survival for people with eosinophilic granulomatosis with polyangiitis (EGPA) has improved in Japan, the introduction of Nucala (mepolizumab) as a treatment for the disease may not, on its own, have had a significant effect. That’s according to a real-world study that analyzed data from 87 EGPA…

Sometimes the hardest losses with ANCA-associated vasculitis aren’t the ones anyone can see. Recently, my brother-in-law finished his last day of work. He’s stepping into retirement, a milestone marked by celebration, reflection, and the promise of something new. I am genuinely happy for him. But alongside that happiness sits…