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…
A higher ratio of disease-inducing neutrophils to lymphocytes at diagnosis may help predict severe infections and mortality in people with ANCA-associated vasculitis (AAV) taking immunosuppression therapy, a study suggests. The study, “The…
This week, my eosinophilic granulomatosis with polyangiitis (EGPA) decided to remind me that it had not gone away and was ever-present. I could feel my symptoms becoming more problematic. I tried to ignore them. The peripheral neuropathy in my feet became more noticeable and interrupted my sleep. My asthma…
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…
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