Picking up the pieces after my vasculitis diagnosis

Janice Barnett poses with a textile piece in the making. (Photos courtesy of Janice Barnett) This is Janice Barnett’s story: My diagnosis of eosinophilic granulomatosis with polyangiitis, formerly known as Churg-Strauss syndrome, in December 2021 plunged me into a state of utter disbelief. I was fit and…

Rachel Young learns to walk again in 2022. (Photos courtesy of Rachel Young) This is Rachel Young’s story: Young hikes in 2023. If I had ever heard the term “vasculitis” before my diagnosis three years ago (ANCA vasculitis with kidney involvement), it wasn’t something that held…

May will be an activity-filled month for people living with vasculitis — and for doctors, researchers, and advocates in the field — as the world recognizes Vasculitis Awareness Month (VAM), and International Vasculitis Day on May 15. Vasculitis is a group of rare autoimmune diseases characterized by inflammation and damage…

Lower blood counts of platelets — tiny cell fragments involved in blood clotting — at the time that ANCA-associated vasculitis (AAV) is diagnosed may be a marker of poorer kidney function and a higher risk of kidney failure, according to a retrospective study from China. Findings suggest that “platelet…

Men with ANCA-associated vasculitis (AAV) are three times more likely to develop cancer, most often that affecting the lungs and the head and neck, than age-matched men in the Turkish population, a study based on patient registry data found. Older age — age 60 or older — at AAV…

The risk of poor outcomes after a kidney transplant is considerably higher for ANCA-associated vasculitis (AAV) patients with kidney failure than people without the autoimmune disease, ranging from infections and disease relapse to death, a review study reports. But long-term survival rates for those who make it through the…

Tavneos (avacopan) safely and effectively promotes clinical remission in people with newly diagnosed or relapsing ANCA-associated vasculitis (AAV), according to a multicenter, real-world study in the U.S. The remission rates after a year of treatment were higher than those in the Phase 3 ADVOCATE trial (NCT02994927), whose…

Sinonasal symptoms, as assessed with 22-item Sinonasal Outcome Test (SNOT-22), a patient-reported questionnaire, are more severe when ANCA-associated vasculitis (AAV) is active than during remission, a study shows. Sinonasal symptoms are those that affect the nose and the sinuses, that is, the air-filled cavities around the eyes and nose.

I recently hit a huge milestone: Eighteen years had passed since my first symptoms of eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA-associated vasculitis, began, and it was the 17th anniversary of my diagnosis. My EGPA has been through many stages of growth: sleep-deprived infancy,…

Patrys’ PAT-DX1 and PAT-DX3, two DNA-targeting antibodies known as deoxymabs, can suppress production of the antimicrobial webs implicated in ANCA-associated vasculitis (AAV) without weakening other immune responses, according to preclinical work. These webs, called neutrophil extracellular traps (NETs), are made up of a scaffold of DNA and enzymes…