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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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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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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Drifa Alfreosdottir and Maria Bjork Vioarsdottir – The Challenges Of Living with Vasculitis in Iceland

L – R: Drifa Alfreosdottir, and Maria Bjork Vioarsdottir. Drifa and Maria met with Ed Becker, VF Director of Marketing and Communications in August. Although Drifa has known Ed since 2002 when she joined his Polyarteritis Nodosa Support Network, this was the first time they met in person. Having a…...

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Brandon Hudgins – Olympics Hopeful’s New Book Tells Story of Going the Distance with Vasculitis

I recently sat down with fellow Vasculitis Foundation Ambassador Brandon Hudgins to talk about life after the Vasculitis Symposium, and more importantly, to talk about his new book “Going the Distance” — now available for purchase on Amazon for Kindle and in paperback. Ben: So, it’s been awhile since we…...

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