“Hey, how are you doing?” It’s a common question that we use to greet everyone from close friends to the cashier at a local coffee shop. If you are a rare disease patient, you’ve likely encountered this scenario at some point on your journey. Someone may ask this basic…
When we ask others how they’re doing, let’s care about the answer
The European Alliance of Associations for Rheumatology (EULAR) has updated its recommendations on managing ANCA-associated vasculitis (AAV) based on new research and clinical data. Four overarching principles were introduced — the importance of patient-physician joint decisions, disease education, routine screening for treatment side effects and additional medical conditions,…
Nearly one-fifth of ANCA-associated vasculitis (AAV) patients in Japan have osteonecrosis of the femoral head (ONFH), a condition marked by the disruption of blood flow to the head of the femur, or thigh bone, a study showed. In most cases, the hip joints already collapsed or were at risk…
People with granulomatosis with polyangiitis (GPA) are more likely to develop an aneurysm — a bulge in a blood vessel wall that can burst or rupture — than those with other types of ANCA-associated vasculitis (AAV), according to a small study in France. Aneurysms mainly affected medium-sized vessels, especially…
Physicians in the U.S. are excited about the potential of Tavneos (avacopan), an approved treatment for people with ANCA-associated vasculitis (AAV), to reduce the use of corticosteroids, a type of steroid medication, in this patient population. That enthusiasm is due to the safety concerns associated with the long-term…
As I approach the 15-year anniversary of my vasculitis diagnosis, I’ve started to contemplate the lessons that battling this disease has taught me. There are many, though some stand out. As an athletics coach, I’m always looking for ways to learn from experiences. My own coach for my decade-plus…
More than one-third of people with granulomatosis with polyangiitis (GPA), a type of ANCA-associated vasculitis, may experience eye symptoms, a study in Italy has found. In many cases, eye symptoms were present from the onset of disease, sometimes even preceding more specific symptoms affecting other body parts. “Patients should…
Many people with ANCA-associated vasculitis (AAV) have profound fatigue that’s severe enough to fulfill the diagnostic criteria for chronic fatigue syndrome, even when the disease isn’t active, a study shows. “We emphasize that physicians should be aware of this when assessing treatment and management strategies for improving quality…
Tavneos (avacopan) was generally safe and well tolerated in adults with severe ANCA-associated vasculitis treated under a global early access program (EAP) before the therapy’s approval, a study showed. EAPs make investigational therapies available outside clinical trials to people with serious or life-threatening conditions who have few or no…
Concerns about the future, their disease’s social and emotional impact, and bodywide symptoms were prominent among those reported by ANCA-associated vasculitis (AAV) patients with low disease activity in a survey study from Mexico. People were responding to the AAV patient-reported outcomes (AAV-PRO) questionnaire, and its specific domains were found to associate…
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