Thursday April 2, 2020

This woman has survived major tumours and is still fighting the rare Von Hippel-Lindau disease

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payel

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.

Biggest Loss

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.

True Grit

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.

Next Story

Painkiller Ibuprofen Has Negative Effects on The Liver: Researchers

This popular painkiller may affect liver enzymes

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Popular painkiller ibuprofen may have more significant effects on the liver than previously thought. (Representational Image). Pixabay

Researchers, including one of an Indian-origin, have found that the popular painkiller ibuprofen may have more significant effects on the liver than previously thought.

Ibuprofen belongs to a group of drugs called nonsteroidal anti-inflammatory drugs, or NSAIDs, widely used over the counter to treat pain and fever. The study, published in the journal Scientific Reports, picked mice for an experiment and showed marked differences between males and females.

“It’s well-established that ibuprofen can cause heart problems and increase stroke risk, but the effects on the liver were less well understood, said study researcher Aldrin Gomes, Professor at University of California, Davis (UC Davis) in the US.

For the findings, Gomes, postdoctoral Indian-origin researcher Shuchita Tiwari and colleagues dosed mice with a moderate amount of ibuprofen for a week — equivalent to an adult human taking about 400 mg of the drug daily.

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Regular usage of ibuprofen can damage the liver and lead to other diseases. Pixabay

Then they used advanced mass spectrometry at the UC Davis’ Proteomics Core Facility to capture information on all the metabolic pathways in liver cells. “We found that ibuprofen caused many more protein expression changes in the liver than we expected,” Gomes said. According to the researchers, at least 34 different metabolic pathways were altered in male mice treated with ibuprofen.

They included pathways involved in the metabolism of amino acids, hormones, and vitamins as well as the production of reactive oxygen and hydrogen peroxide inside cells. Hydrogen peroxide damages proteins and stresses liver cells. The researchers found that ibuprofen had different, and in some cases opposite, effects in the livers of male and female mice.

For example, the proteasome — a waste-disposal system that removes unwanted proteins — responded differently in males and females. Ibuprofen elevated the activity of cytochrome P450, which breaks down drugs, in females but decreased it in males.

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“The elevation in cytochrome P450 could mean that other drugs taken with ibuprofen could stay in the body for a longer duration in males and this has never been shown before. No drug is perfect, as all drugs have side effects,” Gomes said.

However, many commonly used drugs such as ibuprofen are being overused and should not be used for certain conditions such as mild pain,” Gomes concluded. (IANS)