Some days, I wake up and never want to leave the comfort of my bed. I don’t want to get up and struggle through the day. I don’t want to remember that I have eosinophilic granulomatosis with polyangiitis (EGPA), and even simple tasks take more energy than I have.
Why I Stay in Bed Just a Little Longer Each Day
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…
Kidney transplant recipients, whose kidney failure stemmed from ANCA-associated vasculitis (AAV), have less risk of disease recurrence but a higher risk of dying with a functioning transplant, a recent study suggests. These patients also had a higher risk of dying from complications due to immunosuppression and infection. The study,…
The antibody rituximab is a good alternative to cyclophosphamide for inducing remission in people with ANCA-associated vasculitis (AAV), and is better than azathioprine as a maintenance therapy, researchers reported. These were among the findings from a recent review study that investigated the relative benefits and risks associated with different…
“You’re only as old as you feel,” as the saying goes. Unfortunately, since being diagnosed in 2001 with granulomatosis with polyangiitis at age 19, I’ve always felt older than I actually am. My first experience with that feeling was at diagnosis. The doctor who diagnosed me after a five-day…
The majority of people with ANCA-associated vasculitis (AAV) and other forms of vasculitis plan to get the COVID-19 vaccine, and about one-third has already received at least one dose, a recent survey shows. Yet, about 23% of respondents said they are unsure or not planning to receive a…
Measuring liver scarring at diagnosis, using the FIB-5 liver fibrosis index, can help predict kidney failure in people with the two most common subtypes of ANCA-associated vasculitis (AAV), a study reports. Yet, this index was unable to predict mortality from any cause in these patients — who had either…
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed…
Rare is steak cooked to an internal temperature of 120 to 130 F. Rare are opals found in the Nevada desert. Rare is finding out who left the toilet paper roll empty. Rare is not me. I have spent my life trying to be typical and to fit…
A woman was potentially reinfected with SARS-CoV-2 — the virus that causes COVID-19 — while on immunosuppressive therapy for ANCA-associated vasculitis (AAV). This case suggests that immunosuppressed patients are at risk of viral reinfection or persistence, likely because their immune system…
Recent Posts
- I often can’t breathe automatically due to lung issues and AAV
- New kidney risk score shows strong predictive power in AAV study
- Half of adults with AAV have interstitial lung disease at diagnosis, study finds
- Let’s do away with pity parties and start practicing self-compassion
- Urine protein fragments may help assess kidney inflammation in AAV