Sageer Ahmad, a tailor by profession, got to know about haemophilia when his year-old son hurt himself and started bleeding profusely. But Ahmad still didn't learn his lesson. His second son born after a gap of three years was also detected with the blood disorder.
Similar is the story of Bimlesh Sharma. Despite knowing that she is a carrier of the lifelong disorder, she did not get a detection test done when she was pregnant. The result: her son has the same genetic disorder.
Ahmad and Sharma are not the only people who choose to ignore the importance of pre-natal diagnosis of haemophilia - a congenital lifelong bleeding disorder that prevents the blood from properly clotting.
"I got to know about Zahid's condition when he was a year old. He hurt himself and started bleeding. It was only when he was admitted to the hospital for 15 long days did we know about the disease (disorder)," the 34-year-old resident of Faridabad told IANS.
Asked if he and his wife got the test done, he replied: "People used to say that an evil spirit has entered my son's body and that he was not suffering from any disease. It was later that I got to know about his problem. But by the time we realised it, my second son Shahid was born," he added.
Doctors and health experts said awareness about the disease still prevails.
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"Pre-natal diagnosis of haemophilia in India is not common and more awareness is required. Eighty percent of haemophilia cases are seen among the lower income groups and many go undetected," said Anita Suryanarayan, chief of lab services, Lister Metropolis, a Chennai-based laboratory.
India is home to approximately 100,000 people affected with haemophilia, with an estimated prevalence rate of 1:10,000, say experts.
"Haemophilia is neither communicable nor transmitted; it is transferred through inheritance. However, there are chances of getting it even when there is no family
history. About one-third of the haemophilia cases reported are new cases - caused by the new mutation of a gene in the mother or the child," V.P. Choudhary, head of department, haematology, Paras Hospital, Gurgaon, told IANS.
"In case the father carries the gene and the mother does not, then none of the boys will inherit haemophilia; however the girls will be carrying the mutated genes," Choudhary said, adding that women who carry haemophilia genes are called 'carriers'.
"There are around 14,000 registered patients. Sadly, almost 75 percent suffering from the disorder cannot afford the treatment costs. It is a disease that is mostly undiagnosed, unreported and most importantly the patients do not get registered," Choudhary told IANS.
He added that not many hospitals in India provide pre-natal diagnostic facilities.
"There may be no symptoms at birth. However, some symptoms like unusual bleeding during teething and vaccination or severe bruising of the joints when the child is learning to walk may be indicators," said Manoj Rawat, head of the blood bank at PSRI Hospital.
"Depending on the missing clotting factor, haemophilia is classified into haemophilia A or B. Type A is again classified into mild, moderate or severe based on the percentage of deficiency of the clotting factor," Rawat explained and added that in mild cases, one may not be aware of the problem until there is trauma, a dental
procedure or surgery.
According to experts, without treatment or due to delays in treatment, people with haemophilia suffer tremendous pain, swelling, joint damage and possible joint destruction from bleeding.
Asked how difficult it is to counsel parents, Choudhary said: "It is very difficult as it has to be explained to parents that their child is suffering from a rare affliction. Also it is even more challenging to make them understand that the child may have inherited the disorder from the parents."
"It makes the entire process difficult as the parents are not able to understand the condition and accept the fact that it is incurable," he said.
Bimlesh Sharma added: "When I was expecting my child, my in-laws told me that there was no need for me to go for the test. They said nothing will happen."
"My brother had the disease, and he was almost about to die because of lack of medical facilities. It was much later that we found a doctor who was able to help us," she said.
Advising others, Ahmad said: "Though I did not get to know about the disease at the right time, I would suggest other parents to go for the pre-natal test even if they have the slightest doubt."
(Shweta Sharma can be contacted at shweta.s@ians.in)