The Light at the End of 2020

Here it is, the end of 2020, and what a year it has been. After so many dark and worrisome days in this pandemic, it is quite a relief to see a light at the end of the tunnel. I am overjoyed that COVID-19 vaccinations have begun in the…

People with ANCA-associated vasculitis (AAV) who continue to receive high doses of glucocorticoids for more than six months experience no benefits in terms of survival or relapse rates — but have a much higher risk of infections, a new study suggests. The results showed these patients have a significantly…

I have been dealing with vasculitis symptoms and fatigue for the past 14 holiday seasons. In the early years, I was so worried about disappointing my family and friends that I tried to be my old self and accomplish everything. This behavior always led to a series of disasters.

Hypothyroidism, a condition in which the thyroid gland does not produce enough hormones, is not more likely to occur in people with one ANCA-associated vasculitis (AAV) subtype than the others, a study found. But the thyroid disease is associated with the presence of perinuclear ANCA (p-ANCA) antibodies or ANCAs…

Vasculitis UK is urging patients with such autoimmune disorders to complete an online research survey that is seeking to generate a better understanding of the extent and severity of nerve problems in people with vasculitis. The “Survey of disability and neuropathy/nerve problems in vasculitis” was launched by Robert…

“Veni, vidi, vici” is translated from Latin as “I came, I saw, I conquered.” Julius Caesar first said this after a victorious battle. Having a rare illness is a battle every day. I battle to stay alive. I battle to live a fulfilling life. I battle to get out of…

A survey is seeking people with ANCA-associated vasculitis (AAV) around the world to help researchers better understand how patients make decisions about treatment. Called OPTIONS Vasculitis, the survey is collecting responses from people with AAV, including granulomatosis with polyangiitis and microscopic polyangiitis, as…

I reached a milestone in November. Half my life ago, I was diagnosed with granulomatosis with polyangiitis (GPA). On Nov. 16, 2001, I was near death when I was admitted to the emergency room. Nineteen years later, here I am. Each of those years has been a bonus in…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

Genetic variations in the TERT and DSP genes, previously associated with an increased risk of idiopathic pulmonary fibrosis (IPF), are also tied to a greater likelihood of ANCA-associated vasculitis (AAV), a study in Japan found. However, these gene variants are not associated with a risk of interstitial lung…