Wednesday May 23, 2018

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

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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.

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Obesity may affect a child’s liver

Children with a bigger waist circumference (a measure of abdominal obesity) at age three and those with greater gains in obesity measures

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Larger waistline can lead to obesity as well as anxiety in women. Pixabay
Larger waistline can lead to obesity. Pixabay

Parents take note. If your child is obese or overweight, it may have negative impact on his or her liver, a new study suggests. The study found that bigger waist circumference at the age of three raises the likelihood that by the time the child is eight years old, he or she will have markers for non-alcoholic fatty liver disease. Non-alcoholic fatty liver disease occurs when too much fat accumulates in the liver and triggers inflammation, causing liver damage.

“With the rise in childhood obesity, we are seeing more kids with non-alcoholic fatty liver disease in our paediatric weight management practice,” said lead author Jennifer Woo Baidal, Assistant Professor at Columbia University.

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Children are falling prey to obesity. Wikimedia Commons

“Many parents know that obesity can lead to Type 2 diabetes and other metabolic conditions, but there is far less awareness that obesity, even in young children, can lead to serious liver disease,” Baidal added. For the study, published in the Journal of Paediatrics, the researchers looked for fatty liver risk factors in younger children.

The researchers measured blood levels of a liver enzyme called ALT — elevated ALT is a marker for liver damage and can occur in individuals with non-alcoholic fatty liver disease and other conditions that affect the liver — in 635 children. The researchers found that by the age eight, 23 per cent of children in the study had elevated ALT levels. Children with a bigger waist circumference (a measure of abdominal obesity) at age three and those with greater gains in obesity measures between ages three and eight were more likely to have elevated ALT. Approximately 35 per cent of eight-year-olds with obesity had elevated ALT versus 20 per cent of those with normal weight, the researcher said.

Also Read: How Gut Bacteria May Increase Obesity Risk

“Some clinicians measure ALT levels in at-risk children starting at around 10 years old, but our findings underscore the importance of acting earlier in a child’s life to prevent excess weight gain and subsequent liver inflammation,” Baidal said. IANS