Extraordinary Patients

Gabby O’Donnell – GPA/Wegener’s Patient Blog Connects Her with Young Adults Throughout the World

As part of the recently celebrated National Rare Disease Day, I Skyped with Gabriella (Gabby) O’Donnell, a 16-year-old from the Netherlands who was diagnosed with GPA/Wegener’s over two years ago. She recently started a blog to talk about her experiences dealing with vasculitis, which you can read here: http://bit.ly/2FQh1up Hearing…...

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Lauren Becchetti – Young Adult Takayasu’s Patient Grateful for Early Diagnosis

Under the recent “Big Dream” campaign, the Vasculitis Foundation asked me what my dream was for the Vasculitis Community. Part of my response included the idea that it would be great to see all doctors understand and treat vasculitis with the same respect and attentiveness as they do for other…...

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Mark Street – An Australian With GPA/Wegener’s Tells His Story

My story regarding vasculitis is probably not dissimilar to many others with the disease. In late 2015, I acquired a rhinovirus infection. This then led into a bacterial sinusitis. Despite various antibiotic regimes, my sinuses did not improve. In fact, the symptoms worsened. Along with the sinus pain, I had…...

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Kris Kelbrants – Documenting CNS Vasculitis Journey In New Book, Maze of Thorns

Kris with her mother, Sherry. Their book, Maze of Thorns, drew details from a journal that Sherry kept during Kris’ stay in the hospital. Kris Kelbrants was by every measure a successful young woman. In 1993, she graduated Cum Laude from the University of St. Thomas in Minnesota with a…...

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Julie Power – Irish GPA/Wegener’s Patient Establishes (and Grows) Support Organization for Fellow Patients

The Vasculitis Ireland Awareness (VIA) Organization at a past conference In 2010, Julie Power, a Granulomatosis with polyangiitis GPA (Wegener’s) patient, saw a need to create a support group for patients with vasculitis in Ireland. Funded by donations from a biking event led by her husband and sons, the Vasculitis…...

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