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 […]
Two Sides of a Kidney
Blog When you’re a nurse and have four kids under the age of seven, feeling tired can be par for the course. But Theresa Caldron’s fatigue wouldn’t go away and was accompanied by a host of other symptoms. Intrinsically, she knew something wasn’t right, and after two years of repeated trips to the doctor’s office, […]
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. […]
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, […]
“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 […]
“What If Vasculitis Stops Me From Becoming a Mother?”
Blog Samantha SainteMarie was in graduate school, working to get her master’s degree in mental health counseling, when it first happened. She was typing a research paper and noticed that her legs and feet had swollen. By the time the swelling went down, purpura–purple patches on her skin–were all over. “It looked like a port […]