What a difference a day makes with a rare disease

What a difference a day makes with a rare disease

We’ve all heard the phrase “what a difference a day makes.” That couldn’t be more accurate for someone with vasculitis or any other chronic disease. Some days can feel as if they last for weeks or months, or never seem to end. Other days fly by in a minute. For…

Conduit secures US patent for potential AAV therapy AZD1656

The U.S. Patent and Trademark Office (USPTO) has granted Conduit Pharmaceuticals a patent for AZD1656, its experimental therapy for ANCA-associated vasculitis (AAV) and other autoimmune diseases. The USPTO granted a composition of matter patent, which is a type of patent that relates to novel compounds made from two or…

Long-term Nucala found well tolerated as EGPA treatment: Data

Long-term treatment with Nucala (mepolizumab) — approved for use in EGPA, or eosinophilic granulomatosis with polyangiitis, the rarest type of ANCA-associated vasculitis — appears to be well tolerated by most patients, and was seen to reduce or even eliminate corticosteroid use. That’s according to new data from an…

Disease symptoms in AAV vary by age at diagnosis, sex, study finds

Disease symptoms among people with ANCA-associated vasculitis (AAV) were found to vary by age at diagnosis and biological sex, according to data from more than 1,100 Scandinavian patients. “We identified significant differences in clinical presentation of the disease between female and male patients and between patients with a young…

We must avoid comparing ourselves with others with ANCA vasculitis

It’s hard not to compare ourselves with other people living with ANCA vasculitis who have benefited from medications and treatments. Comparing is human nature — and the cause of much suffering. It’s particularly hard when we’re experiencing a flare or side effects of our tough medication regimens. Seeing people…

Review study highlights AAV-ILD patients’ mortality risk factors

A higher risk of death among AAV patients with interstitial lung disease (ILD) is significantly associated with older age, episodes of sudden symptom worsening, and microscopic polyangiitis (MPA), a common type of anti-neutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis (AAV). That’s according to a review of published studies that also pointed…

Adjusting to a brand new terrain after my EGPA diagnosis

This February marked four years since the day my world — our world — changed forever. For the previous 11 months, my wife, Pam Squires, and I had been stuck in a relentless loop, a medical maze with no clear answers. Fifty-seven different trips to the hospital or doctor’s office.

Guest Voice: A pharmacist weighs in on patient-centered care

Rita Martins is a dedicated clinical pharmacist with extensive experience in primary care and hospital settings. Passionate about patient-centered care, she empowers patients and caregivers through education, ensuring they are actively involved in their treatment journey. With a strong commitment to fostering engagement and delivering high-quality care, Rita strives to…