I have a rare illness called eosinophilic granulomatosis with polyangiitis, or EGPA. It causes an increased number of white blood cells known as eosinophils, which can cause significant inflammation in my organs and my small and medium blood vessels. EGPA has affected my heart, lungs, sinuses, gastrointestinal system,…
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…
New statistical models could help to predict the risk of relapse and infection following ongoing rituximab treatment in people with ANCA-associated vasculitis (AAV), a study suggests. These models may aid in clinical decisions about the relative risks and benefits of continuing to use rituximab beyond its customary two years…
A positive attitude has helped me get up each day and face the world. I know I feel stronger and ready to take on the planet this way. I can advocate for other patients and model that life is still worth living, despite having a chronic illness. A positive attitude…
In some cases, infections may trigger the development of ANCA-associated vasculitis (AAV) with antibodies against the myeloperoxidase (MPO) protein, but the condition — known as AAV-MPO — typically regresses after the infection is treated, a systemic review finds. However, the use of immunosuppressive medications to treat…
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…
I never expected that wearing masks while I traveled would be my trendsetting mark on the world. I never expected the world to join me in wearing masks during cold and flu season. In 2020, COVID-19 changed all that, and I became a trendsetter. For a decade now, I have…
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to patients with compromised immune systems or those participating in gene therapy studies. That was the message of a recent…
The Vasculitis Foundation is urging people living with vasculitis to tell their personal stories on collectable baseball-type cards named “Patient Heroes.” This inaugural initiative will be part of this year’s Vasculitis Awareness Month events, which runs each May. On the Patient Heroes collectable cards, people living with this rare…
Battling an autoimmune condition is difficult enough, but when my own brain decides to work against me, it can be even more challenging. Anxiety is one of my biggest foes, and while I have gotten better at handling it, I have yet to conquer it. I went to my…
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