Navigating grief after a vasculitis diagnosis and the loss of a loved one

Today I find myself thinking back to four years ago, when I was diagnosed with eosinophilic granulomatosis with polyangiitis. My father had died the year before, and once a week I’d spend the night at my mom’s. In part, it got me out of the house, as I was…

Long-term treatment with Nucala (mepolizumab) is safe and effective in people with eosinophilic granulomatosis with polyangiitis (EGPA), the rarest type of ANCA-associated vasculitis (AAV), according to a meta-analysis of eight studies. After nearly two years of treatment, more than half of EGPA patients achieved remission, meaning they had…

Ratios of different kinds of blood cells, reflecting inflammation and immune activity, may be a cheap and efficient tool to aid in the diagnosis of ANCA-associated vasculitis (AAV), and in predicting disease activity, a new study from China reports. “While not standalone diagnostic tools, these markers offer valuable support…

I’ve been thinking a lot lately about the word “grace.” It’s a word that stirs something in me every time I hear it — something that gives me hope and reminds me to aim higher. Living with chronic illness has given this word even more weight for me. Grace…

Some people with ANCA-associated vasculitis (AAV) have elevated biomarkers suggesting activation of the immune system’s complement cascade, which is known to contribute to AAV, even when they’re in disease remission, a study showed. While these biomarkers did not appear to be associated with an increased risk of future disease…

The most common neurological symptoms of ANCA-associated vasculitis (AAV) among patients in a single center in Columbia — regardless of disease type — were headache and objective signs of damage to nerves outside the brain and spinal cord, a study showed. That said, the researchers found a vast array…

I’ve been reflecting lately on just how important — and how hard — it is to build a care team that actually works for you. It sounds simple, but it’s not. And if you’ve ever had to start from scratch or find a new provider, you know how unsettling that…

In adults with ANCA-associated vasculitis (AAV), the amount of TWEAK protein in urine was about 50% as high when their disease was active as after six months of treatment, making it a useful biomarker for tracking disease activity, according to a new study from Sweden. The study further found…

Vertex Pharmaceuticals has signed a license agreement with Ono Pharmaceutical to develop and market povetacicept — a B-cell-targeting candidate for treating ANCA-associated vasculitis (AAV) and other autoimmune diseases driven by self-reactive antibodies and marked by signs or symptoms of kidney involvement — in Japan and South Korea.

We all have things we don’t talk about with our doctors. The reasons are endless. Sometimes we feel rushed and don’t think there’s enough time to share everything. Sometimes we’re unsure whether what we’re experiencing is even relevant. Other times, it just feels too personal, too private, or too painful…