When November comes, I start to think about hibernating. As soon as the temperature dips below a certain range, some kind of primitive signal goes off in my head. It’s a little voice that says, “Time to stay indoors and get comfortable.” After all, when it’s dreary…
It’s Beginning to Look a Lot Like Winter, and I’m Prepared
After an initial biopsy shows signs of active ANCA-associated vasculitis (AAV) affecting the kidneys, repeat biopsies are better at determining active disease than standard measures of kidney function, a new observational study reports. Such repeat kidney biopsies may help determine treatment response and personalize care plans for people with…
Kidney disease is less common among people with eosinophilic granulomatosis with polyangiitis (EGPA), but some patients may experience severe kidney damage and require management by specialists, a case report shows. The study, “Renal Involvement in Eosinophilic Granulomatosis With Polyangiitis,” was published in the journal Kidney International Reports.
It sometimes feels silly when I receive an invitation for an event happening more than a year in the future. This is because the details of my everyday life can be so overwhelming it’s all I can do to focus on the here and now. Maybe I’ll focus on next…
A retrospective study by the National Institutes of Health (NIH) suggests that healthcare costs for those with rare diseases have been underestimated, possibly being three to five times higher than for those without rare diseases. This study provides evidence of the potential effect rare diseases may have on public health…
A woman of childbearing years developed ANCA-associated vasculitis (AAV) after taking the thyroid medication methimazole to treat her Graves’ disease, a case report shows. The patient experienced signs of respiratory and kidney failure secondary to AAV, but her symptoms improved after discontinuing the medication and starting immunosuppressive medications. Four…
Columns
What Do We Do About Stress?
The topic of stress is much too familiar to autoimmune disease patients. Even in remission, I’m not immune to the overwhelming feeling that comes when my cortisol levels spike. I’m not a physician or a researcher, and plenty of studies about the science behind stress are available to…
In their continued efforts to improve health equity for people with rare diseases, Global Genes and RARE-X have joined forces to help advocacy groups collect patient data and make the most of that information. “Patient data is perhaps the most valuable asset rare disease communities can leverage to…
Tavneos (avacopan), a recently approved add-on oral therapy for severe, active ANCA-associated vasculitis (AAV), will be distributed in the U.S. by PANTHERx, the country’s leading rare disease pharmacy. The announcement follows an agreement with ChemoCentryx, Tavneos’ developer, which selected the pharmacy as a limited distribution partner. “PANTHERx is proud…
Columns
My Vasculitis Origin Story
I’ve been writing my column, “Peaceful Chaos,” about living with granulomatosis with polyangiitis (GPA) since June. I’ve written about my medications, doctor appointments, and the daily struggles of being chronically ill. I’ve discussed the psychological effect this disease has had on me and on others, and what…
Recent Posts
- Preparing for hip replacement surgery with ANCA vasculitis
- Protein building block may be a therapeutic target for childhood AAV
- European agency reevaluates AAV drug Tavneos after trial data concerns
- Living with chronic illness has taught me to hold on loosely
- Rituximab matches cyclophosphamide in inducing AAV remission: Review