It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.
Note: This story was updated Feb. 22, 2022, to update the headline and clarify that some patients on rituximab do not mount an effective T-cell response to the COVID-19 vaccine. A significant proportion of patients on rituximab, including those with …
“Tell me about your disease.” This should be an uncomplicated request, but it’s not. Where do I start? What do I say that accurately encapsulates vasculitis but doesn’t confuse, mischaracterize, or bore? On the surface, describing my condition is simple: It’s an autoimmune disorder that causes inflamed blood vessels. But…
People with ANCA-associated vasculitis (AAV) want more disease-related information from their healthcare providers for better self-management, a study based on patient interviews reported. Patients said they needed better communication about symptoms, relapses, living with AAV, and mental health. This led researchers to call on healthcare professionals to…
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…
Tavneos (avacopan), in combination with rituximab, leads to high remission rates without a need for standard glucocorticoids in people with ANCA-associated vasculitis (AAV), according to a small, real-life study in France. These findings add to results from previous clinical trials, further supporting Tavneos as an effective first-line approach…
There’s a customary phrase in the vasculitis community: “We’re sorry that you’re here, but we’re very glad you found us.” Coined by Marilyn Sampson, the founder of what is now the Vasculitis Foundation, it’s a succinct reminder of the dual nature of living with chronic illness. After…
A case of reinfection with COVID-19 has been reported in a patient who received immunosuppressive treatment for ANCA-associated vasculitis (AAV), which was linked to her first infection. Before her second infection, the 70-year-old African woman was given prednisolone and cyclophosphamide to combat AAV-associated kidney damage that had occurred after her…
Levels of a protein called KL-6 are elevated in ANCA-associated vasculitis (AAV) patients who have interstitial lung diseases, indicating that KL-6 blood levels could be useful for detecting lung disease in these people, a study suggests. The study, “KL-6 in ANCA-Associated Vasculitis Patients with and without…
In the vasculitis community, patients often encounter uncomfortable situations. Disease symptoms plague us. Getting used to shifted routines takes some adjustment. And maybe worst of all, new medications can cause debilitating side effects. Among the various unpleasantries, one name makes even the seasoned autoimmune patient shudder with revulsion: prednisone.
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