By Shreya Upadhyaya
Have you ever heard of Von Hippel-Lindau? At 35, Payel Bhattacharya has already endured eight major surgeries including a liver transplant and brain tumour operation due to it.
Payel suffers from a rare genetic disorder called Von Hippel-Lindau (VHL), in which blood tumours constantly form in blood vessels. The disease is so rare that out of over a billion Indian population, only 70 have been detected with the syndrome so far.
VHL syndrome is caused by a gene mutation and leads to an abnormal capillary growth in internal organs like the lungs, heart, pancreas, liver and intestines. Normally, our capillaries branch out like trees. In VHL patients, little knots of extra capillaries form tumors that have to be removed.
Unaware of the genetic disorder at first, Payel was detected of it at the age of three. She underwent her first surgery at the age of 12 to remove a tumour in the left foot. 23 years later, she underwent a brain tumour surgery and then doctors confirmed VHL.
The biggest shock came in four months later, when she was diagnosed with tumours in her liver. Since then Payel has suffered from a minor stroke and paralysis of the left side after her brain surgery. Till now she has had tumors removed from her foot, knee and brain which was followed by a liver transplant surgery.
After this, she had to take regular doses of immunosuppressant drugs which greatly weakened her immunity. She was diagnosed with tuberculosis of the bones, which is resistant to any possible treatment. She had to undergo a surgery on her neck for the removal of an enlargement. She has now turned partially blind as the tumours have spread over her eyes and is on a life-long medication of three anti-convulsants.
Her father’s death in 2009 made her life even more difficult as she lost a strong pillar of support. And the reason of his death was that he could not undergo a heart surgery due to lack of funds because all his retirement benefits were exhausted on Payel’s previous surgeries.
Over the years Payel and her mother have moved several houses. From their 2,200 square yard ancestral home in Kolkata to a windowless one bedroom home in a crowded and suffocating unauthorized colony in South Delhi, hers has been a tough journey. Her previous landlord asked her to leave as he thought hers is a contagious disease.
However, Payel has been and continues to be a fighter and her condition has not weakened her passion for life.
She has been optimistic. She says that she “loves life and wants to live it to the fullest.” She adds that she is aware that her genetic disorder is incurable, not terminal.
But financial worries constantly loom large over Payel as given her genetic disorder, emergency can crop up any time.
“Many donors pay for one or two months. But I need lifelong medical support. I can lead a normal life with medicines, but my resources are limited and fast exhausting,” says Payel.