According to a story from Kractivist, 38 year old Payel Bhattacharya has the rare genetic disorder von Hippel-Lindau disease, or VHL. Payel has written a book about her life called A Warrior Dies Dancing, That’s Who I Am that describes the way that the rare illness has affected her life. By writing about her life as a rare patient, Payel hopes to spread awareness about this poorly understood genetic disorder.
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 of von Hippel-Lindau 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 von Hippel-Lindau disease, click here.
Payel’s Story
Payel has had to receive treatment for her tumors many times. She has undergone 14 different surgical operations (including a liver transplant) as well as radiation therapy. Unsurprisingly, costs for all of this treatment add up and have made her financial situation very precarious at times. This problem was exacerbated a decade ago when her father passed away. In 2013, doctors gave her seven years to live after they identified multiple brain tumors.
Payel says that it can be difficult to explain her disease to others because she doesn’t look sick most of the time.
Payel is almost always taking immune system suppressants, which makes it difficult for her to travel because of the possibility of getting sick. The best way that Payel copes with her situation is by writing and reading. She has completed a total of five books so far.
