Hindustan Times (Mumbai) October 21, 2014

Kids with rare liver disease get support

HT Correspondent

htmetro@hindustantimes.com

MUMBAI: Dadar resident Madhura Mhatre can easily be mistaken for a doctor when she explains medical jargon. Mhatre, the mother of an 11-year-old girl who has a rare liver disease called Budd Chiari syndrome, is always a phone call away for parents whose children have been detected with the disease. Last Saturday, about 50 parents and their children formed a support group for those with Budd Chiari Syndrome.

“There were several questions which I forgot to ask the doctors. My experiences help the parents understand the condition,” said Mhatre, who had to quit her job to look after her daughter.

Mhatre’s daughter was diagnosed with the condition, when she was three. The family, for the next 18 months, visited many paediatricians but ended up with no improvement in the child’s condition. “Doctors were only draining liquid from her stomach, which was temporary relief. With time, her condition deteriorated and doctors had no answer regarding the cause,” said Mhatre.

Budd Chiari s yndrome, doctors said, is a very uncommon disease with over 50 cases recorded from across the country with Children”s Liver Foundation, a non-profit working with children affected with liver diseases.

“Many doctors are unaware of this condition, making it difficult to diagnose. The swelling is a result of blockage of blood supply from the liver to the heart,” said Dr Abha Nagral, Hepatologist associated with the foundation.

Doctors perform an angioplasty to unblock the blockages and restore the blood flow. “As many are diagnosed late, the blockage needs to be restored by placing stents in the blood vessels. In many, even placing stents doesn’t help and liver transplant is the only hope,” said Nagral,

The Disorder

BUDD CHIARI SYNDROME (BCS)

Budd Chiari Syndrome is a disorder affecting the liver and blood vessels, where blood flowing into the liver has difficulty flowing out, leading to serious complications.

SYMPTOMS OF BCS