New Delhi: An injection given to Tarun Kumar's son when he was three-months-old resulted in non-stop bleeding for a few hours. The infant was referred to the capital's Sir Ganga Ram Hospital where the condition was identified as hemophilia, a blood clotting disorder.
Similar was the story of Karan, 21, who used to regularly bleed from his mouth as an infant and had blue patches on his body. The bleeding would recur every two hours. His father Chandan took him to PGI-Chandigarh and later to a hospital in Mumbai where he was declared to be haemophilic.
But, despite the extremely serious nature of the condition, Tarun Kumar's son and Karan are leading near normal lives today.
Tarun Kumar's son is now 21-years-old and is doing his graduation while Karan is studying in one of India's best technical institutes. So how are they coping with haemophilia?
The key to leading a better life with hemophilia is early detection and condition management and the responsibility for that lies with the parents. There is no cure for haemophilia, only management, say doctors.
"Parents should immediately highlight trivial injuries leading to profuse bleeding, big blue patches on the body, small wounds taking a very long time to heal and swelling in joints. These are all symptoms of haemophilia," V.P. Choudhry, haematologist at Gurggaon's Paras Hospital, told IANS.
Unexplained nasal bleeding and blood in the urine or the stools are also indicators.
Hemophilia is acquired at birth by children with a family history of the condition. However it has also been observed that the disorder can be found in children without any family history as well.
The protein needed for normal blood clotting is absent in hemophilia, so even a small injury can develop into a life-threatening condition.
Choudhry said that the incidence of hemophilia in India is 1:10,000 and there are estimated to be 120,000 cases.
"Since hemophilia is discovered mostly in toddlers, parents should know about it and stay alert for any signs. Diagnosis and timely beginning of treatment with some caution can allow the child normal unhindered growth," said Satish Koul, internal medicine specialist at Gurgaon's Columbia Asia Hospital, told IANS.
Hemophilia is a genetic disorder. It is mostly found in boys and very rarely in girls, said Choudhry, who worked for 35 years in the haemotology department of AIIMS.
The disorder can be managed by infusion of clotting factor, using medicines to promote clots and healing, avoiding bleeding, exercising regularly, avoiding contact sports, maintaining good dental hygiene and following safe practices.
Medical management of the condition includes infusing blood clotting factor concentrates into the body to prevent bleeding. This is called prophylactic therapy and is administered on the basis of the patient's weight. It also entails giving injections to the patient whenever they bleed, also called on demand prophylactic therapy. The efficacy of the medicine, contained in vials, is measured in units.
"A 20 kg baby requires 250 units of prophylactic therapy thrice a week and 3,000 units a month. It is an expensive treatment and costs more than Rs. 30,000 ($482) per month for a 20 kg child," Choudhry said.
A 15-year-old patient weighing around 50 kg needs 1,500 units of prophylactic therapy per episode and in a month needs three to four episodes costing around Rs. 80,000 to Rs. 90,000.
"It is a very expensive treatment, and my son now takes it only on an SOS basis," said Tarun Kumar, who has started a comprehensive hemophilia care centre which requires a haematologist, orthopaedist and a physiotherapist at Sunflag Hospital in Faridabad in association with Pahuja Centre for Blood Disorders.
"In internal bleeding like brain hemorrhage, inside the stomach and inside the hip, the expenses will be unimaginable and run into lakhs of rupees," Tarun Kumar added.
Internal bleeding in the joints of knees or elbows can result in pain, leading to the advanced onset of arthritis.
"We have sensitized the Haryana government and it is giving the (anti-hemophilia factors) injections for free at six civil hospitals since a year," Tarun Kumar said.
The six hospitals are located at Gurgaon, Faridabad, Rohtak, Yamunanagar, Hisar and Ambala. "We appeal to the government that there should be no shortage of the injections," Tarun Kumar said.
"Parents who are educated, rich and who have the option of getting reimbursed are going for prophylactic therapy. And their children are leading normal lives," added Choudhry.
He said prophylactic therapy is helping patients lead normal life in developed countries as they are rich and can afford it.
The other pillar of successful hemophilia management is physical exercise. "Regular exercise is very important for these kids as it builds muscular strength which prevents them from frequent injuries, so regular exercise should always be encouraged," Gaurav Kharya, consultant at BLK Super Speciality Hospital, told IANS.
"These kids should refrain from sports where they have the potential to injure themselves. Activities like brisk walking, jogging, running and swimming are very good for these kids," he added.
Tarun Kumar said swimming is the best exercise as the chance of getting injured is very low since the individual will be swimming in the smooth medium of water, adding that cycling and physiotherapy are also highly recommended.