Woman with rare genetic disorder seeks financial help to save her life

Fighting a rare genetic disorder, Von Hippel-Lindau (VHL) — an autosomal genetic condition that predisposes individuals to benign and malignant tumours — Payel Bhattacharya, (34), who has already undergone over eight surgeries and a liver transplant, is worried about where she will get the financial support to continue her treatment.

Speaking about her ordeal, Payel said: “I have had 10 surgeries and a liver transplant, however, the need for surgery is a life-long requirement in my case. The approach to tackling the disease includes surgery or radiation. I have been diagnosed with multiple tumours in the brain and thyroid and urgently need surgery for complication arising from VHL. Government hospitals centres don’t have the technology to treat me and I have been dependent on private units. Our family also suffered a major set back after my father’s death.’’

Elaborating on her financial trouble, she added that she lives with her mother and that her monthly medical expenses run into thousands per month. “On a regular basis I am required to take immunosuppressant drugs for my liver. However, it was the death of the father that hit me the most.’’

Payel’s medical expenses are being paid for now by her brother, who has just started his career in cinematography.

“I have been surviving but recurrent money problems are posing a grave threat to my life. My genetic disorder is incurable, but not terminal. It can recur but with the right treatment and a balanced lifestyle, it can be checked. I appeal for help from either the Health Ministry or NGOs and individuals,” said Payel.

(Payel can be reached at 9711197537).

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Printable version | Aug 17, 2022 4:28:29 am |