We can carry forward the momentum from awareness month

As I look back on Vasculitis Awareness Month in May, I find myself grappling with a complex wave of emotions. On one hand, there’s undeniable excitement and a spark of validation. For once, the spotlight is on our disease, which usually lurks in the shadows. ANCA-associated vasculitis is a…

Andrea Merriam, left, and Sarah Jones attend the World Parkinson Congress in Kyoto, Japan, the year before Jones began experiencing EGPA symptoms. (Courtesy of Andrea Merriam) This is Andrea Merriam’s story: The following is a conversation between ANCA Vasculitis News columnist Sarah Jones and her colleague and friend, Andrea…

An imaging test that can make detailed pictures of the heart can detect scar tissue buildup in the heart muscle of adults with ANCA-associated vasculitis (AAV), even if they’re not having disease symptoms, a review study shows. “Incorporating cMRI [cardiac MRI] into routine evaluations could improve the detection and…

Pam Squires is the wife of columnist Sarah Jones, who lives with ANCA vasculitis. (Courtesy of Pam Squires) This is Pam Squires’ story: For the last 30 years, since my wife, Sarah, and I met on a blind date in Grand Rapids, Michigan, we have been active in…

Janessa Kaneaster’s 7-year-old daughter, Kaylee, who has ANCA vasculitis, takes a break for a picnic lunch. (Courtesy of Janessa Kaneaster) This is Janessa Kaneaster’s story: When your 7-year-old gets diagnosed with something as rare and complicated as ANCA vasculitis, everything shifts. It’s not loud panic — it’s more…

Infections are a leading cause of early death in adults with ANCA-associated vasculitis (AAV), being most common in the first year after a diagnosis when treatment with immunosuppressive medications is most intense, a single-center study in Australia suggests. Hospitalizations due to infections tended to decrease after a dedicated vasculitis…

Heather Fish takes in the fresh air of the coast after seeing improvements following treatment for her EGPA. (Photos courtesy of Heather Fish) This is Heather Fish’s story: It was a terrible time in so many ways. My husband had cancer in a place that meant he could no…

Adults with active eosinophilic granulomatosis with polyangiitis (EGPA), a rare type of ANCA-associated vasculitis (AAV), report improvements in health-related quality of life as early as one week after starting treatment with Nucala (mepolizumab). These are the findings of a multicenter European study that evaluated the effects of Nucala…

Steven Chetham runs a 5K race in Boulder, Colorado, in September 2024. (Photos courtesy of Steven Chetham) This is Steven Chetham’s story: I was diagnosed with granulomatosis with polyangiitis (GPA) in September 2023. Everyone’s journey with ANCA-associated vasculitis (AAV) is different, but we do have many…

Induction therapy with cyclophosphamide and rituximab allows for early discontinuation, without compromising efficacy, of an oral-only glucocorticoid regimen in people with severe ANCA-associated vasculitis (AAV), a study found. Patients on oral glucocorticoids for up to three months showed comparable remission and relapse rates, but tended to have fewer infections…