Thirty-year-old Paresh Parmar, a successful businessman residing in Vile Parle, was just six months old when he was diagnosed with haemophilia.
It took him 16 long years to procure more information and completely understand what he suffered from — a lifelong genetic blood disorder that prevent proper blood clots.
“I had purple bruises when I first started crawling, the first indicator that there was something wrong,” said Parmar, on the eve of World Haemophilia Day on Saturday.
Dr Devila Sahu, paediatrician, who has been actively involved with the Hemophilia Society — Mumbai (HSM) chapter for the past 25 years, explained the disorder.
“People with haemophilia do not have enough clotting factor, a protein in blood that controls bleeding. As a result, they suffer from sudden bleeding inside the body for no apparent reason,” said Sahu. “Children with repeated untreated bleeds are disabled, drop out of school, become social outcasts and suffer from anaemia and arthritis.”
Indira Nair, president of the society, who has a 24-year-old son — Vinay — suffering from the disorder, recounted her son’s tough school years.
He couldn’t give his SSC exams three years in a row as each year he happened to suffer from internal bleeding during exam time. “Life with hemophilia is a constant painful struggle.
Dealing with it is a huge challenge. Nevertheless, it is possible to lead a normal life with the help of lifelong treatment.” Nair said, adding that her son is pursuing an MBA in finance now.
The only treatment available is the periodic infusion of anti haemophilic factor (AHF) injections, which are expensive. “In the open market, the injection costs about Rs30,000, and each patient may need two or even more such injections every month, depending on the severity of haemophilia,” said Sahu.
The HSM caters to about 1,200 patients from the city and around 300-odd patients from across the state and country. They are offered the AHF injection at Rs17,000.
Tests to diagnose haemophilia, which cost about Rs2,000, are done free of cost at the Institute of Immunohematology at KEM Hospital.
Nevertheless, there is a huge shortage of funds. “Some states like UP, Karnataka, Tamil Nadu and Delhi offer AHF free of cost. We have appealed to the state government to do the same here,” said Balshiram Gadhave, secretary, HSM, who also suffers from the disorder.
Hemophilia Society Mumbai can be reached at 2415 8315 or www.hemophilia.in
