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Welireg Made a von Hippel-Lindau Survivor Feel Like a 'Medical Miracle'
Sailaja Darisipudi(she/her) has previously led communications for nonprofit organizations fighting against gendered violence and worked as an educator. She believes passionately in fighting for gender equality, destigmatizing mental health, making quality health resources available across socio-economic statuses and decreasing the gap between public education and the complexities of the American health care system. At Rutgers University, Sailaja studied public health, wrote and edited for newspapers such as RU Examiner and EMSOP Chronicles and accumulated an alarming number of parking tickets. When not working, Sailaja can be found getting lost (literally and metaphorically) in new cities, overanalyzing various romance books and streaming shows and ordering all the vegetarian items at different restaurants. You can also find her on Twitter at @SailajaDee.
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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