The Ups and Downs of December

The Ups and Downs of December

I can handle November all right. The air is chilly and the sky is gray, but I stay busy and content going through the motions at a manageable pace. December is different. It sweeps in right after Thanksgiving in a manic holiday frenzy, ready or not. Between busy schedules and…

What to Look for in a Vasculitis Specialist

The doctor-patient relationship is unique. A doctor sees you intimately and is privy to your vulnerabilities, both physical and psychological. I’m thankful to have had many vasculitis specialists in the past decade, some of whom have also evolved into trustworthy friends. For those with vasculitis, your doctor may become one…

AAV Patients Independently Adopt Self-management Techniques

People with ANCA-associated vasculitis (AAV) adopt a range of strategies that help them to better cope with the condition on their own, but several areas of self-management could be addressed more immediately through conversations with their physicians, a study found. The study, “Addressing the transition to a chronic…

Progranulin Protein Levels in Blood May Predict AAV Severity

Blood levels of progranulin — a protein involved in cell development, cell growth, and wound healing — may predict the severity of ANCA-associated vasculitis (AAV), a new observational study suggests. According to researchers, serum progranulin, or the protein’s levels in the bloodstream, “could be used as a predictive marker…

The Emotional Toll of Illness

Anxiety. Fear. Depression. Grief. Rage. Have you experienced any of these after receiving a diagnosis? Whether patient or caregiver, the emotions surrounding illness can take up an unexpectedly large chunk of one’s energy. Vasculitis primarily affects the physical body. Inflammation is a visceral symptom, causing pain and discomfort while threatening…

Rare Disease Groups in US Join in Plea for Care Across State Lines

Over 230 national organizations signed a letter urging all 50 U.S. state governors to “maintain and expand” flexibility with licensure requirements for the duration of the COVID-19 pandemic to ease access to care. During the pandemic, governors used emergency authority to waive certain state licensure requirements, giving healthcare providers…

When Traveling With Chronic Illness, Planning Is Key

As the holiday season approaches, people will begin making travel plans, and their to-do lists can be extensive. Book a flight. Communicate with family. Check the weather forecast. Do laundry.  Being sick and having a weakened immune system, however, can add even more items…