Welireg Made a von Hippel-Lindau Survivor 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.

The neurosurgeon performing the surgery decided to sequence the blood vessels that made up the tumor and diagnosed Korbitz VHL, an inherited disorder that affects approximately 10,000 people in the United States and Korbitz had no family history of the disease. Of note, patients with VHL disease are prone to developing tumors — both cancerous and non-cancerous — throughout their