What is your diagnosis day? Mine is April 1, 2007. There was irony in finding out I had a life-altering, incurable illness on April Fools’ Day. I accused my doctor of playing a prank on me. I thought he was joking. Before my diagnosis, a few medical professionals…
As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…
People with ANCA-associated vasculitis (AAV) who receive mycophenolate mofetil (MMF) as a remission induction therapy have similar remission rates as those given cyclophosphamide (CYC), an analysis of eight published studies has found. The study, “The Role of Mycophenolate…
The disease-causing autoantibodies are sometimes present long before the onset of ANCA-associated vasculitis (AAV) symptoms, with distinct disease features depending on their antibody type, a recent study finds. Overall, the study presents “evidence of an initiation of the autoimmune process in…
Levels of the chitinase-3-like 1 (YKL-40) protein in the blood may serve as a helpful biomarker of disease activity in people with ANCA-associated vasculitis (AAV), findings from a new study suggest. Yet, additional studies are needed to validate the results and elucidate the role of YKL-40 in AAV, the…
“You are about to enter another dimension. A dimension not only of sight and sound, but of mind. A journey into a not-so-wondrous land of side effects. … Next stop: the ‘predni-zone.'” I have been living in the “predni-zone” for more than 14 years. In eosinophilic granulomatosis with polyangiitis…
Research into the potential interplay between different immune system components and coagulation in patients with ANCA-associated vasculitis (AAV), COVID-19 and systemic lupus erythematosus (SLE) has won a grant from the Academic Alliance Fund (AAF). The grant was awarded to Johan van der Vlag, PhD, and Cansu Yanginlar, MSc, at the…
People with ANCA-associated vasculitis (AAV) who receive rituximab treatment may have a higher risk of severe COVID-19 outcomes and should therefore be considered vaccination priorities, a recent case report suggests. The time since a patient’s last rituximab infusion and their current immunoglobulin level appear to be the most important…
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.
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…
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