Persevering in a New Reality

After being diagnosed with granulomatosis with polyangiitis, I felt like life as I knew it was over, and a new reality was emerging. When I was diagnosed, I was a 19-year-old sophomore in college. I missed the last half of fall semester, and it was possible that I would…

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

People with kidney inflammation due to ANCA-associated vasculitis (AAV) have a high incidence of venous thromboembolism or VTE, a potentially dangerous type of blood clot, a new study shows. However, treatment with statins — cholesterol-lowering medications — may significantly reduce patients’ VTE risk, researchers say. The…

When I began college in the fall of 2000, I expected it to be similar to what my siblings had experienced or what I had seen on TV: making friends, having fun, enjoying a massive amount of freedom, and even going to class. I didn’t expect to fight an illness…

A group of proteins that modulate immune responses, called heat shock proteins (HSPs), are significantly elevated in the kidneys of people with ANCA-associated vasculitis (AAV), and their levels are associated with poorer kidney function and organ survival, a multi-year study found.  These…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

I was in a hospital room, dazed and confused. A doctor had sent me there after a chaotic trip to the emergency room. The first nurse to treat me said I had a hemoglobin level of 3.8 deciliters. My resting heart rate was 140 beats per minute, and when I…

Adding plasma exchange to immune-suppressing treatment does not significantly improve clinical outcomes in people with ANCA-associated vasculitis (AAV), a new meta-analysis indicates. The analysis, “The role of plasma exchange in antineutrophil cytoplasmic antibody-associated vasculitis: a meta-analysis,” was published in Clinical Rheumatology. AAV is characterized by…

My long journey began in Virginia in 2001 at 18. I was in college at the time, and two friends and I decided to go on a trip during a three-day weekend in the spring. We stayed at my friend’s house, and I remember very clearly getting a pain in…

High blood levels of FCRL5 — a protein mainly found in certain B-cells, a type of immune cell — are linked with a greater likelihood of achieving and maintaining a complete response to rituximab in people with granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA),…