After around a 10-month hiatus, we are excited to announce that Patient Worthy’s award-winning podcast “Wait, How Do You Spell That? A Rare Disease Podcast” is back in action with a new episode. Colby sits down with Justin Corbin, who lives with Von Hippel-Lindau disease, a rare genetic illness that results in abnormal tumor growth in various areas of the body, such as the eyes, kidneys, and spine.
This one is a bit shorter than usual, but you can expect regular episode releases to return for the foreseeable future.
Read more about Justin’s journey in this interview.
Interested in getting involved in the Von Hippel-Lindau disease community? You can get started by visiting the VHL Alliance website.
Check out the episode below:
About Von Hippel-Lindau Disease
Von Hippel-Lindau disease is a genetic disorder that affects many different parts of the body and its systems. It is mostly characterized by the appearance of visceral cysts and tumors that have the potential to transform into deadly cancer. There are various different subtypes the disease that are distinguished by clinical presentation and correspond to a different genetic mutation affecting the VHL gene. Symptoms of the disorder include high blood pressure, problems with vision, headaches, angiomatosis, difficulty with walking and balance, weakness of the limbs, and dizziness. Tumors that are associated with the disease include hemangioblastomas, endolymphatic sac tumors, papillary cystadenomas, and pheochromocytomas. It is also associated with kidney cancer (renal cell carcinoma) and pancreatic cysts, which can develop into pancreatic cancer. Treatment for von Hippel-Lindau is mostly supportive and includes regular screenings for tumors that may need to be surgically removed or monitored. To learn more about the disease, click here.
Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a journey to share, reach out to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.
