PAN Patient Raises Vasculitis Awareness Through Flash Mob Dances in Washington State

In light of the symptoms and treatment options, a diagnosis of vasculitis can actually be a positive, life-changing experience for some patients. After 26-year-old Jessica Kent was diagnosed with polyarteritis nodosa (PAN) in 2015, she discovered a passion for working in healthcare and a greater appreciation of life. She learned to appreciate the little things […]

The Final Answer

July 27 Refresh. Refresh. Refresh.  As an intern, I combed through the electronic medical record each day, hoping to find the pathology reports for my patient, Grace (NB: name has been changed to protect privacy). Grace was a middle-aged woman who had presented to the hospital with a myriad of complaints. During my initial assessment, […]

Medical Education is a Core Value at UCSF’s Vasculitis Clinic

The uncommon or rare nature of vasculitis can unfortunately lead to delays in diagnosis and treatment. This is an important reason why ongoing medical education is essential. As more physicians learn about these diseases, better care can be provided for patients with vasculitis. Educating future rheumatologists and internists is a top priority at the University […]

Pinochle Night Brings Friends Together During Pandemic

By Fran Crotty My 85 year old mother splits her time between living at her Florida condo in the cool months and her Long Island, New York condo in the warm months. When in Florida, she plays in several bridge games each week. My brothers and sister have always been competitive in sports. I thought […]

A Family’s Personal Journey Through Vasculitis

In life we often find that while not every story has a happy ending, we can learn from others’ experiences and hold on to hope. In the context of the vasculitis journey, we can hope for an early diagnosis, better treatments, advanced research and, ultimately, raise awareness. This is the story of Javier M. Diaz, […]

VF Board of Directors Welcomes Caz Cazanov

In March 2019 we published a story about Caz Cazanov and her personal experience with vasculitis. After being diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA) in 2017, Caz was treated with high-dose steroids and cyclophosphamide infusions, and spent three weeks in the hospital and in a multidisciplinary rehabilitation facility. She tapered off prednisone about a […]

New Vasculitis Program Opens at the Medical College of Wisconsin

Until now there were no vasculitis centers in Wisconsin. Many vasculitis patients there had to travel long distances to places such as Chicago, Illinois, or to the Mayo Clinic in Rochester, Minnesota, to find a specialist with a focus on vasculitis research and clinical care in their practice. To address this need, rheumatologist Michael Putman, […]

Fran Crotty’s Morning Routine: Prepare Inner Self to Create a Positive Start for the day

In April 2020, the VF ran an article about Fran Crotty, who was diagnosed in 1996 with granulomatosis with polyangiitis (GPA) and Crohn’s disease. Fran has managed to stay in remission for almost two decades and in the April article, she describes how faith and positivity have fueled her personal transformation. You can read it […]

Stanford’s Vasculitis Clinic Expanding Access to Care in Northern and Central California

Early in her medical training, Audra Horomanski, MD, saw several healthy young adults’ lives turned upside down by life-threatening vasculitis—and then saw the dramatic difference that could be made with appropriate treatment. Later in rheumatology training, she met many patients who had long delays in diagnosis because their symptoms came on slowly or they lived […]

Columbia University Irving Medical Center Creating Dedicated Vasculitis Center

Daniel DeMizio, MD, developed a passion for treating vasculitis early on in his career. He was taking care of a critically ill patient with vasculitis during the first month of his fellowship at New York-Presbyterian Hospital when he recognized that this family of diseases encompassed all that had initially drawn him to rheumatology. “Affecting nearly […]

For Yanique, it’s About Holding on to Hope

Yanique was just 9 years old when she was diagnosed with central nervous system (CNS) vasculitis—a rare inflammatory blood vessel disorder of the brain and spinal cord, which make up the central nervous system. It’s a serious condition in which the inflamed vessels can block the flow of oxygen to the brain, causing potentially life-threatening […]

VF’s First-Ever Virtual Pajama Party Benefit Brings Down the House!

Who knew how fun a virtual pajama party fundraiser could be? We certainly found out, when more than 250 members of the vasculitis community donned their favorite PJs and gathered with family and furry friends for an evening of online performances, touching testimonials, and messages of hope on Saturday, June 20, 2020. The sold-out VF […]

Dr. Eric Gapud: Giving Back by Furthering his Medical Training in Vasculitis

When Eric Gapud, MD, PhD, was in medical school, he was diagnosed with an autoimmune disease. As you might expect, he can empathize with the experiences of his patients, particularly those with vasculitis and anyone who has been diagnosed with a rare disease. A physician-scientist, Dr. Gapud is also an instructor of medicine on the […]

Fran Crotty Finds that Faith and Positivity Fuel Her Personal Transformation

Back in November 2013, the VF ran an article written by Fran Crotty, who was diagnosed in 1996 with granulomatosis with polyangiitis (GPA) and Crohn’s disease. In her own words, she “has come back from her challenges, only slightly worse for wear, yet filled with optimism, strength in her faith and a greater appreciation of […]

Dr. Rebecca Manno: Bringing Rheumatology Expertise to the US Virgin Islands

The US Virgin Islands (USVI) have always been a special place for rheumatologist Rebecca Manno, MD, MHS, because she and her husband, Nick Hoyt, have vacationed in the territory for the past 20 years. But after the two devastating Category 5 hurricanes in 2017 (Irma and Maria), Dr. Manno began learning more about the health […]

Q&A with Brandon Hudgins: Thoughts on Olympics Postponement and COVID-19

California Runner Finds Helpful Support Through VF and Brandon Hudgins

Art Diaz, a 49-year-old married father of two, embodies the southern California lifestyle of health and vitality. A native resident of Garden Grove in Orange County, Art works as a retail manager at Skechers, the lifestyle apparel brand headquartered in nearby Manhattan Beach. An avid runner, Art has spent many hours logging countless miles on […]

VF Young Adults Group Spearheads New Vasculitis Visionaries Podcast Series

As 2020 kicks into full gear, our VF Young Adults community has continued growing and coming up with new ways to build upon a successful 2019. Last November, we were fortunate enough to be honored in Kansas City for our efforts to raise awareness about vasculitis through a video featuring about a dozen young adults. […]

Kathy Olevsky: Enjoying Life in Remission from MPA and Pursuing Her Passions

After Kathy Olevsky was diagnosed with ANCA-associated microscopic polyangiitis (MPA) in 2009, it took her about a year to realize that she would never be the same person she was before she became sick. But when you read her story, you’ll see that this determined 62-year-old is not only surviving, she’s thriving. Kathy was a […]

Dr. Velma Mockett: Turning Pain into Passion and Purpose

Patients with vasculitis and their families may find it helpful to talk to a counselor or therapist to sort out the variety of feelings that can come with a diagnosis. Some may have a hard time accepting the disease; others may feel anxiety, anger, fear, sadness or even guilt about being sick because of the […]

Brandon Hudgins Sets His Sights on U.S. Olympic Team Trials in 2020

Most days, professional distance runner Brandon Hudgins wakes up with a burning desire to reach the goals he’s dreamed of since he was 15 years old. But there have been days when the obstacles seemed insurmountable. At one point, in 2013, he quit running entirely and threw his gear in the trash. He couldn’t handle […]

Living with Kawasaki Disease Brings Out Strength, Hope and Resilience

For Nicol Jackson, one particular incident stands out as a stark reminder of how rarely some doctors ever see a patient with vasculitis. Her 5-year-old son, Josh, who was being treated for Kawasaki disease, experienced severe chest pains. Nicol and her husband, Rob, rushed him to the emergency room at a hospital in London, Ontario, […]

Balancing School and Vasculitis: Perspectives from Students and Parents

Lori Larson and son, Matt Being a young adult with vasculitis is challenging enough, but trying to navigate through school while managing the illness demands extraordinary skills. We asked a cross-section of young adult patients (and some parents) how they found the balance between health and academics. “One of the hardest things for me as […]

Support Groups, Family Help Ease Long Journey with Rare Urticarial Vasculitis

For Richard Kujawa, attending the 2019 International Vasculitis Symposium in Bloomington, Minnesota, during July was a chance to learn more about urticarial vasculitis, the rare disease he was diagnosed with in recent years. But he got something else he wasn’t expecting: a connection with someone who has the same disease. Richard, 72, was sitting in […]

Creating Vasculitis Awareness in a Remote Corner of Ontario

A personal and professional mission for Dr. Michael Fernando and his wife, Patti Kemp. Michael Fernando, MD, is a family practice and emergency physician who lives and practices medicine in rural southwestern Ontario, Canada. Following medical school in the UK (Bart’s and the London School of Medicine), Dr. Fernando trained in family medicine near Fort […]

Positivity, Perseverance Inspires Other Young Adults in Vasculitis Community

This summer’s International Vasculitis Symposium in Bloomington, Minnesota, marked another successful gathering of young adults and continued the growth of our community. While it was great to see old friends again, I was reminded of how this disease continues to impact new people every year, and how scary and daunting it can feel as a […]

Positive Outlook Keeps Her Afloat in Journey with Behcet’s Disease

If Sarah Hewawitharana could be any other creature on this planet, there’s no question what it would be. The name she chose for her email address says it all: [email protected] “I like it because it reminds me not to take life too seriously. I’ve always been obsessed with the water, the ocean and fish,” says […]

Brandon Hudgins Looks Ahead to New Season of Competitive Racing

Three years ago, professional runner, Brandon Hudgins, beat the challenges from his granulomatosis with polyangiitis (GPA, formerly Wegener’s) to qualify for the 2016 Olympic Trials in the 1500-meter run. Although he didn’t make the Olympic team, Brandon hasn’t lost his determination to race competitively and is keeping a hopeful eye on the 2020 Olympic Games. […]

Caz Cazanov: Becoming an Educated Patient Through VF Conferences

Obviously, there’s never a “good” time to be diagnosed with vasculitis, but sometimes an onset happens with ironic impact at the worst possible time. In 2016, Caz Cazanov was looking forward to enjoying her new life after retiring from Kaiser Permanente, where she had spent 24 years working in health insurance legislative and regulatory policy. […]

Brian Kilgarif: A Success Story in Using MobileCause to Raise Funds for Vasculitis

If you ever need a shot of motivation, just talk to Brian Kilgarif. Brian is raising money for the VF on behalf of his wife, Steph, who was diagnosed with granulomatosis with polyangiitis (GPA) in 2002, when she was 16. His goals are to raise vasculitis awareness, and to honor the strength of his wife […]

Connection at VF Symposium Eases Isolation of Takayasu’s Arteritis

Loneliness is a common feeling among patients with vasculitis. When you find someone else on a similar path, it can help ease the isolation. That’s what happened to Dedra DeMarco and Devri Velazquez, who met at the 2019 International Vasculitis Symposium in July and discovered they share a lot in common on their journey with Takayasu’s arteritis (TAK) [...]

VF Research Committee Paving the Way For a New Generation of Investigators

The promise of better treatments for vasculitis has special meaning for Jason Springer, MD, MS, chair of the Vasculitis Foundation (VF) Research Committee and member of the VF Board of Directors. Before he ever started medical training, Dr. Springer’s father was diagnosed with vasculitis, a disease he had never heard of before. Despite treatment, his […]

Sam and Helen Dodge: Feeling Hope in the Wake of a Vasculitis Diagnosis

Sam Dodge spent much of his working life as an ad cameraman, and he collects antique motion-picture cameras, so it’s not surprising that he thinks in terms of film metaphors. Sam was diagnosed last year with microscopic polyangiitis (MPA), and he describes the experience like this: “Sometimes I feel as if we are all living a slow-motion British murder mystery and we patients are the potential victims,” Sam said.