The golden haired boy with startling white skin and red freckles asleep at the intensive care unit of the Annal Gandhi Government Hospital is an object of interest. Rajeshwari, his mother, hovering over his bed, is accustomed to the askance looks for 15-year-old Hariharan, who stands apart due to his double malaise – he is the only member in the Tiruchi Chapter of the Haemophilia Society with leucoderma and haemophilia.
The chapter affiliated to World Haemophilia Foundation has members like Hariharan from all over Tamil Nadu–Thanjavur, Madurai, Salem, Karur and Nagapattinam. Haemophilia is a genetic disorder that causes uncontrolled bleeding. While most people who cut themselves on a sharp surface, may stop bleeding sooner or later due to clotting agents in the blood, at least one in 10,000 may suffer uncontrolled profuse bleeding due to deficiency of clotting factor unless a clotting factor is injected into the blood.
Haemophiliacs are classified according to deficiency of factor type, though factor VIII is the most common. While males are usually affected, women haemophiliacs are often carriers of the disease. Haemophiliacs may develop disabilities due to recurrent bleeding and swelling.
Saga of hope
Before free factors were introduced at all government medical college hospitals in the State, haemophiliacs were dependant solely on subsidised factors provided by the society and spent close to Rs.50,000 a year.
The society with neurologist Dr.Sundararajan as treasurer and Tara Sundararajan as president has provided close to 300 members with hope, says Nagarathinam, moderate haemophiliac, who makes a monthly trip from Kattumanarkoil, near Chidambaram to maintain his factor level. “I teach in a government aided school. It is the constant encouragement provided by the society that has helped me live a normal life these 20 years. I have never taken my disease seriously.” Members attend school or college, work as lawyers and teachers.
A couple of decades ago, the average life span of a haemophiliac was 14 years. But the society since its inception has seen four deaths, and those included a person with HIV–AIDS, a paraplegic, says Dr.Sundararajan.
Change of vision
Today with an outpatient service unit offering weekly health check-ups, an exclusive bed for treating haemophiliacs, and free factors stocked up for prompt treatment in the government medical college hospital, the long-time demand for state-sponsored treatment has been realised.
The State government has sanctioned 10,000 units per person per year free of cost. With 72 members registered at the government hospital here, there is a provision for 7.2 lakh units a year.
Major bleeds are still rushed to the Neuro Centre, headquarters of the haemophilia society here. “Soon all haemophilia societies maybe changing their principal objectives from beyond providing factor treatment to economic and social empowerment,” says Dr.Sundararajan. The headquarters has already taken the first step by offering jobs as counsellor, cafeteria vendors and launderers in the hospital to persons with haemophilia.
“What troubles haemophiliacs and family is when the person is going to bleed. They impose various conditions like don't go out, don't do this and that,” says Dr.Sundararajan. To help patients lead healthy lives, physiotherapy and other exercises are recommended. The society has also trained haemophiliacs in self-infusion for emergencies. Prophylaxis, denoting regular infusion of factors to prevent bleeding by ensuring normal factor levels is ideal. Though desired, it is not practical in a country like India where resource constraints abound, says the neurologist. Besides, this should be done regularly from a tender age without discontinuing.
He rather advises that haemophiliacs take factors anticipating bleeds before dental procedures or surgery.