Welireg Made a von Hippel-Lindau Survivor Feel Like a 'Medical Miracle'

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Advocacy Groups | <b>VHL Alliance</b>

When Sean Korbitz was a 20-year-old college student, his life trajectory changed with a rare cancer diagnosis, resulting in the removal of 40 tumors; fifteen years later, a new drug made him feel like a “medical miracle.”

After being diagnosed with von Hippel-Lindau (VHL) disease, a rare tumor disorder, Sean Korbitz spent most of his 20s and 30s hoping to make it to his 60. However, after starting a new medication, he is feeling more optimistic about having a “normal life span.”

For six months in 2007, Korbitz threw up every morning and his doctors had no idea why. Suspecting a pinched nerve in his neck, Korbitz’s doctors ordered the Colorado native MRIs for his head and neck.

Within a couple of hours, he was undergoing emergency surgery. The MRI revealed that Korbitz had a brain tumor that had been growing for six months.

In today’s episode of the “Cancer Horizons” podcast, Korbitz explains what it was like to receive a diagnosis of a rare genetic disease

as a young adult, how his life has changed since going on Welireg, his work with the VHL Alliance, his advice for patients with VHL disease and more.

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