Last summer, my husband and I bought an RV to drive across the U.S. to see my dad. My mom died last spring, and we hadn’t yet traveled to visit my father in Florida, because of COVID-19. I really needed to hold my dad’s hand and hug him. I…
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…
The risk factors that predict serious infections in people with ANCA-associated vasculitis (AAV) vary with time, a study found. Factors associated with early infection include age and admission to an intensive care unit, whereas kidney function is the most important risk factor for late infections, the investigators said. The…
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-19Â changed all that, and I became a trendsetter. For a decade now, I have…
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