In the world of rare disease and chronic illness advocacy, certain phrases catch on quickly. They appear in research papers, nonprofit materials, conference presentations, and patient engagement efforts. One phrase I hear constantly is “lived experience.” To be honest, I’ve never liked it. This may sound like a small thing.
In most people with kidney damage due to ANCA-associated vasculitis (AAV), outcomes from initial treatment to bring the disease under control are similar across commonly used immunosuppressive therapies, including cyclophosphamide and rituximab. That’s according to a study analyzing data from hundreds of patients at several European centers.
People with ANCA-associated vasculitis (AAV) who develop bronchiectasis — a chronic lung condition marked by permanent widening of certain parts of the airways — may face a higher risk of serious infections and death, according to a new study. The researchers found that bronchiectasis in individuals with granulomatosis with polyangiitis…
Becoming educated and informed about ANCA vasculitis is a good first step. Here you’ll find general information such as the diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your ANCA vasculitis journey.
There is no cure for ANCA vasculitis yet, but here you can find more information about current approved treatments, as well as experimental treatments that are in the pipeline.
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