She Never Imagined Being a Sick Parent
Blog “Do you mind if I just change her nappy?” We were midway through our conversation when Gussie Blake noticed Grace, her 5-month-old daughter whom she had been cooing at throughout our Zoom call, fussing. “Of course not,” I said. Gussie carried on talking as she got up, moving Grace and the phone with her […]
Never-Ending Battle: A Personal Fight for Medical Care
Blog “Sometimes, I feel like I’m living in an alternate reality, like I’m stuck somewhere on the inside and I’m watching everything else happen outside of me.” When I asked Ruth, who’s living with an alphabet soup of autoimmune diseases, including hypocomplementemic urticarial vasculitis (HUVS), what it’s like living with a chronic illness, her voice […]
“He died 4 days before his son was born.” Scott & Kelsey’s Vasculitis Story
Blog They never expected it. “Scott passed away four days before he could have met his son,” Kelsey, his wife, told me. “I am reminded every day. It hurts.” For several weeks, he had been sick: cough, body aches, fever, joint pain. Until one night he began coughing up blood and couldn’t catch his breath. […]
Finding a Way Through, Together
Blog Darrin White’s life has meandered. He was born in the Canadian province of Manitoba. His father was in the Canadian Armed Forces, so their family moved a lot—“roughly every 20 months of my childhood,” Darrin said. As an adult, he lived for “a stint” in Ottawa, another stint in Halifax, followed by time in […]
Mom’s Determined to Take Back Control Over Daughter’s Vasculitis
Blog “I remember the day Addy was diagnosed with Stage 4 Kidney Disease. At the time, I didn’t know what that meant. I thought it was a death sentence.” It’s been over three years since Jen Wilson’s then-six-year-old daughter, Addison Grace, was told her kidneys were failing and that she had microscopic polyangiitis (MPA) vasculitis. […]
Call for Submissions
Blog The John Grube Foundation e.V., based in Hamburg, awards the “John Grube Prize” in honour of its namesake, who died young of granulomatosis with polyangiitis (GPA). The DGRH has been involved in the award since 2021 by appointing a board member to the foundation’s advisory board and providing a platform and a worthy setting […]
My Life Changed When I Had a Stroke In College
Blog Ingrid, a college student living with central nervous system (CNS) vasculitis, shared her story with the Vasculitis Foundation in her own words: In the fall of 2022, I was in my sophomore year of college. I started feeling terrible the very first week of classes. It was August 27, I was studying and feeling […]
Revelations: How One Woman is Emerging from her Vasculitis Gloom
Blog When I spoke to Lupe on the phone for the first time, I asked her to describe herself in a few words. Colleagues had already told me about her, calling her “hilarious,” “always uplifting,” and “welcoming.” But when I asked Lupe, who’s been living with granulomatosis polyangiitis (GPA) vasculitis since July 2023, she paused, […]
We All Deserve Kindness
Blog Before Irene Tipton began her journey with (Granulomatosis with Polyangiitis) GPA, she had dedicated her life to helping others learn. First as an elementary school teacher, then an assistant principal, and then training other teachers, she used her gifts to connect people and ideas. In 2020, her world changed when a string of physical […]
“I Had No Idea If I was Going to Live or Die” – Alex’s Teenage Journey with Vasculitis
Blog Meet Alex, from Fort Mitchell, KY, who’s living with GPA vasculitis: I was diagnosed in June 2018 when I was 16 years old and in between my sophomore and junior years of high school. The challenges I faced with vasculitis were plentiful. I woke up one day being unable to bend my knees without […]