With nine surgeries, a Delhi woman fights a rare disease

New Delhi: Life cannot be more cruel to Payel Bhattacharya, a patient of Von Hippel-Lindau (VHL), a rare autosomal genetic condition that predisposes individuals to benign and malignant tumors. The 34-year-old, who has already undergone nine surgeries, is still suffering as the tumors continue to spread in her body - and the medical costs spiral.

Bhattacharya, who has three tumors in her brain and several others in her pancreas, has now turned partially blind as the tumours have spread over her eyes.

Bhattacharya, who lives with her widowed mother at Hauz Rani, an urban village in south Delhi, is being supported by her Mumbai-based brother. But her brother's earnings too are becoming insufficient for her treatment, with her condition deteriorating day by day.

"Owing to the lack of financial resources, my chances of recovering from my problems seem bleak...but I have the right to life, health and peace...social support and worthies to come forward is necessary for my survival," Bhattacharya said.

According to health experts, tumours in VHL become cancerous in its later stages and spread to other body parts through lymphs or blood.

With the tumours in her body mushrooming and affecting many of her vital organs, Bhattacharya has been undergoing treatment by several organ specialists, whose expenses run into thousands of rupees every month.

"Living with such a rare asymptomatic genetic disorder called VHL has made my life a constant battle to keep between the shores; not knowing what's in store. Due to involvement of multiple organs, different doctors look after the symptoms. This is itself a challenge for me and my family due to the expenses (involved)," Bhattacharya, who is fighting her condition bravely, lamented.

According to health experts, Bhattacharya's situation is a severe one, especially due to the complexities associated with the management of various types of tumours and the multi-disciplinary treatment involved.

"As the disease is genetical, the tumours can't be stopped from mushrooming. Only surgeries can help remove the tumours," radiologist Harsh Mahajan, who has done the radiology imaging of Bhattacharya's tumours, said.

He said that in such situations, a patient cannot be cured.

"However, her condition can be kept under control and the tumours can be stopped from growing bigger through continuous medication," he said. "Medical processes like radiology, followed by their treatment to stop them from spreading involves high costs," added Mahajan, a former president of the Indian Radiologist Imaging Association (IRIA).

Apart from the troubles confronted by Bhattacharya, one of the the biggest problems she faces is that every time a new tumour grows in her body, she has to consult a new specialist.

"This only means added expenses - to test and diagnose the damage caused by the tumours," she said.

"Surgery is a life-long requirement in my case. The only approach to tackle the disease includes surgery or radiation. I have been diagnosed with multiple tumours in the brain and thyroid and urgently need surgery to battle the complication arising from VHL," Bhattacharya added.

VHL, being a rare disease, is found in one among 36,000 people. Due to the scarcity of such cases, even the government does not have any statistical records.

Aditya Gupta, senior neurosurgeon at Medanta who had conducted one of Bhattacharya's surgeries, said: "The prognosis for those with VHL depends on control. Those who go untreated will develop blindness and even brain damage and will ultimately die from complications. Her (Bhattacharya's) situation is no different."

He added that those treated, especially those who are diligently monitored and have lesions removed while still small, have better chances of survival.

"Payel's condition, even though not curable, can be improved by careful monitoring and medication which requires high cost," Gupta said.

Calling VHL one of the least known diseases among people across the globe, Gupta said "Payel needs support - both mental and humanitarian - which will help her gain the will to live.

"The non-existence of charitable groups and NGOs working for the cause has made any research so far untested. People need to understand that such patients need help so that they can live life like others," Gupta added.