Members of our vasculitis community learn from each other every day. We encourage you to share your thoughts about the impact that vasculitis has had on your life and the lives of your loved ones. We want to hear from everyone – patients, family members, medical professionals and researchers.
There are two ways to share your story or feel free to combine:
Print: Click here to share your story in print format.
Video: The VF YouTube Awareness channel features videos submitted by members of our vasculitis community.
Click here to learn more about submitting your Extraordinary Story Video, including instructions on how to film your video, Release Form, and how to upload your video.
Below is a list of the most recently posted stories. You can also use the following links to jump to stories concerning a particular disease:
My Churg Strauss (EGPA) Life I never feel why me? I feel why not me? CSS (Churg Strauss Syndrome/Vasculitis), now known as EGPA – Eosinophilic granulomatosis with polyangiitis – is an autoimmune disease which is incurable, progressive, and can be life-threatening. Fortunately, I was diagnosed relatively early, and I am under excellent management by a more »Read More
Carrie Gallagher is a wellness professional. So after being diagnosed with granulomatosis polyangiitis (Wegener’s) in 2012, she did the only thing she knew to do: Make lifestyle changes to help her live actively with the disease. “I do certain things to help myself besides traditional medicine,” she says. Gallagher had prednisone and rituximab treatments after more »Read More
Matt “Boomer” Zupanc is the P.A. announcer for the Victoria Harbourcats Baseball team on Vancouver Island, Canada. Matt, 21, was diagnosed with vasculitis as a toddler and over the past 20 years has faced many health challenges. Through all the tough times, the one constant thing has been his love playing baseball, first as a more »Read More
Giving to Others helps the Soul Since being diagnosed in 2002, Brian Crenshaw has undergone 11 surgeries and five cardio conversions. But you’d be hard-pressed to know he has Granulomatosis with polyangiitis (GPA/Wegener’s). “God has blessed me in ways I can’t begin to understand,” says the Cincinnati, Ohio resident. “So while life is clearly not more »Read More
The Power of Transformation It all started when my husband and I planned a dream vacation to Nantucket, with reservations at a quaint B&B on the island. Although I couldn’t wait for this get-away, I couldn’t seem to keep my eyes open to take in the beautiful view as we flew onto the island. While more »Read More
Climb Every Mountain: Living Creatively With Chronic Illness Given that Celeste Castillo Lee used “Bridge over Troubled Waters” in the title of her keynote address at the 2013 Vasculitis Foundation Symposium I thought I would use a song title from The Sound of Music for this article. It is a very apt title because I more »Read More
NIH-funded study finds that rituximab is as effective as standard therapy, requires shorter treatment duration Administering the drug rituximab once weekly for one month provides the same benefits as 18 months of daily immunosuppressive therapy in people with severe forms of vasculitis, or inflammation of the blood vessels, a study has found. Researchers from the more »Read More
Maureen has Takayasu’s arteritis. A few years ago, Maureen began to experience a cluster of symptoms. She also experienced one of the great challenges for vasculitis patients—getting a diagnosis. A pulmonologist said that she had asthma. A neurologist that said that she was having migraines resulting for a possible seizure A physiologist said she needed physical more »Read More
Marcia has Granulomatosis with Polyangiitis (GPA/Wegener’s). As you watch Marcia’s video, you may sense a familiar story that vasculitis patients know all too well. She describes her visits to one doctor after another as they tried to pinpoint her chronic symptoms. Each one seems to have a little bit of a clue, but the whole more »Read More
Judy Henoch-Schonlein Purpura (HSP). In this extraordinary vasculitis story, Judy talks about living with Henoch-Schonlein Purpura (HSP), also known as anaphylactoid purpura. Judy not only was diagnosed with a rare disese, but one that typically affects children (an incidence of approximately 13 cases per 100,000 children per year.) You’ll learn how the vasculitis specifically affected more »Read More