Payel Bhattacharya is a famous young Indian author writing fiction and non-fiction books in the English language. Five of her books include The Warrior Princess, A Warrior Dies Dancing That’s Who I am…: A Survival Story, Mum, and Princess go spying, Sweeter than Revenge, and Mum and Princess in Mystic Land. But this introduction of Payel is insufficient. Payel is, unfortunately, also one of India ’s very few patients of Von Hippel-Lindau syndrome. VHL syndrome is an inherited disorder characterized by the formation of tumors and cysts in different parts of the body. Tumors may be either noncancerous or cancerous. So far, Payel has undergone numerous surgeries in her different organs. Even though she was always a bright student, she couldn’t complete her college because of her serious health issues. Her parents had always been very supportive of her. Her father did his best to take care of Payel’s health and fund her treatment. But he lost his life as the family couldn’t afford a bypass surgery for him. Payel feels sad for being one of the rare patients in India dealing with VHL. Despite the tough life, Payel is living it to the fullest. She loves to make friends and write poems. Whenever free from visiting hospitals, she loves to post her writing on Facebook and chat with friends.
Payel Bhattacharya was three-year-old when she felt a sharp pain in her left foot while trying to twirl. She fell down on the floor of her ancestral home in Kolkata. Her parents noticed a slight swelling in her foot. The doctor in the neighborhood concluded that it was a minor hairline fracture, a common mishap hyperactive kids of that age. He assured her parents that she would be fine in a couple of days, and would soon dance again. But unfortunately, it turned out that the doctor was wrong. The pain never left Payel and the swelling in her left foot remained for the next nine years till the doctors realized that it was a tumor (it was of the size of a freshly baked bread!) that had to be surgically removed. At the age of twelve, Payel had her first surgery. What she and her parents didn’t know was seven more surgeries were to follow in the years to come.
The Revelation About VHL Syndrome
That twirl that Payel made at the age of 3, turned out to be her last twirl ever. It was actually her first encounter with Von Hippel-Lindau (VHL) syndrome, a rare genetic disorder that she was born with and had to live with for the rest of her life. While her father struggled with paying her medical bills, Payel was struggling with trying to understand what was happening with her. Though she attended school, she often missed classes because very often she would be waiting in various doctors’ chambers. Somehow she managed to finish school but couldn’t complete her college. She left college after the first year of Bachelor of Science.
She had trouble explaining the pain she experienced to her doctors. She would often tell them that she was doing okay only because she couldn’t describe the crushing, heavy ache. Her mother saw the pale look on her face and sad expressions and helped her narrate her trouble. Payel says the pain is similar to how you would feel if your bones were being crushed with a mortar-and-pestle. Sometimes, it is worse.
What is VHL?
VHL syndrome is caused by a gene mutation and leads to an abnormal capillary growth in internal organs like the lungs, heart, pancreas, liver
After the liver transplant surgery, Payel had to take regular doses of immunosuppressant drugs which weakened her immunity greatly. As a result, she contracted MDR tuberculosis of the bones, which is resistant to any possible treatment and
Being one of the rare VHL patients in India, few people, including the doctors, know about Payel’s rare illness. There are societies for patients with VHL syndrome in the United States, and the same can be formed in India affiliated with that society. But in lack of any such society in India, Payel stays in touch with them as an individual.
Being India’s rare disease VHL patient is a big curse for Payel. Her ordeal started with the doctors taking a long time to identify the syndrome. Now, it is all about arranging the finances and paying off her medical expenses, which come to a minimum of Rs 15,000 every month. Payel has to depend on corporate donations and financial help by friends. Getting corporate funding or assistance from NGOs is also a big deal. Once, when she went to meet the representatives of an NGO of international repute, one of the representatives thought she was lying about her illnesses. He Scienceremarked, “It’s a miracle that she has survived all diseases possible in the world—Heck, she is lying.” Payel felt extremely hurt at that moment.
People often suggest Payel about alternative therapies of treatment like aura reading and reiki. They say ‘We are there for you and will give you moral support’. But that makes her sad. Payel doesn’t need moral support. She needs money for her treatment, which is being done by the best doctors at Gurgaon’s Medanta hospital. Treatment, not moral support, will help her live.
Throughout her life, Payel’s father had been her chief support both emotionally and financially. He took loans and funded her treatment until he expired in April 2010 after a heart attack. He had had his first heart attack just around the time she had her brain surgery. He was on a ventilator for nine days but was back with Payel when she had her liver transplant within the next six months. Her father had an 80 percent blockage in his heart but postponed his bypass surgery as they couldn’t afford it. He had a second cardiac attack in April 2010, and this time, he could not survive it.
Since her father’s death i.e. April 2010, Payel, her mom and brother have been on their own. Her brother is a budding filmmaker in Mumbai. He supports his mother and Payel with their rent and expenses. Over the years, they have changed a large number of houses. They live in a windowless one-bedroom home in a crowded and suffocating unauthorized colony in South Delhi. Since she cannot walk much, the cab fare runs to about Rs 600 on each visit to the hospital.
Payel Bhattacharya often wonders why she had to give up her love of sketching (because her finger muscles have weakened and she cannot hold a pen for long). Why she cannot take a walk to the malls next to her house. Why she literally has to feel like a beggar every month when all she needs is some money to pay her medical bills. Ironically, a mutant gene did it all! Often Payel gives a vent to her feelings through her poems that she posts on Facebook for her friends to read.
Payel’s Message to the World
“Life is to be celebrated, moments cherished because our days are numbered.
Payel’s story proves
Connect With Payel
Payel will be thankful if you can lend a helping hand in her treatment by providing whatever help you can. Here are her bank account details:
ICICI Bank Account number: 103101510715
IIFSC code: ICIC0001031