Vasculitis Stories

What does living with vasculitis mean for you?

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:

Note:

The Vasculitis Foundation is most grateful to authors who have shared their personal experiences with vasculitis. The reader should be aware that these contributions are personal reflections by the writer and do not represent medical scientific statements. Therefore, such information while being accurate perceptions of the writer, may not be scientifically accurate and may not apply to other patients.

Lynn’s Story

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 »

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Carrie’s Story

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 »

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Vasculitis Night at the Harbourcats

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 »

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Giving to Others Helps the Soul – Brian’s Story

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 »

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The Power of Transformation – Fran’s Story

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 »

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Climb Every Mountain: Living Creatively With Chronic Illness

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 »

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Therapy for Severe Vasculitis Shows Long-term Effectiveness

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 »

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Maureen’s Story

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 »

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Marcia’s Story

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 »

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Judy’s Story

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 »

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Participation in Clinical Trials is one way you can help advance research into finding better treatments and perhaps even a cure for vasculitis!
Learn how you can participate in clinical trials - National Institutes of Health

Vasculitis Foundation Fellowship Program

The Vasculitis Foundation Fellowship provides the opportunity for one- or two- year tracks designed to support the training of physician scientists who wish to gain clinical expertise in vasculitis and who may also wish to pursue an investigational career in this field. The fellowship will be conducted through Vasculitis Centers where there has been a track record of training individuals in vasculitis.

"The Vasculitis Foundation is committed to creating greater awareness and interest in vasculitis," said Joyce Kullman, executive director of the VF. "We hope that our new Vasculitis Foundation Fellowship will encourage medical professionals to pursue careers in patient care and research linked to vasculitis."

The Vasculitis Foundation Fellowship is possible thanks to the generous support of Genentech, Inc., and Biogen Idec and many other generous individual and corporate donors. For more information on how you may donate to the Vasculitis Foundation Fellowship, visit the donate page.

Medical Institutions

The Vasculitis Foundation encourages vasculitis patients to seek expert medical care for diagnosis and treatment of the disease. The VF works closely with vasculitis experts and centers around the world to ensure patients have access to the most up-to-date medical care.

The Vasculitis Clinical Research Consortium (VCRC) is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in different forms of vasculitis and improving the care of patients with vasculitis.