When Abdul Basith was three months old, he developed a deep bruise on his chest. When he was one, he fell and hurt his gums, and started bleeding profusely. The flow of blood continued for a week; it took painful knots of surgical thread to stop it. Six months later, his left knee swelled up to twice its size for no apparent reason. All these are telltale symptoms of haemophilia, but Abdul was diagnosed with the condition only when he was five.
Lack of awareness among parents and late diagnosis are the chief reasons for delayed treatment for haemophiliacs. The situation is, however, a lot better than what it was two decades ago. Back then — when the disorder went largely undiagnosed — haemophilia was an invincible enemy. “A brother of mine died when he was only 10. He displayed the same symptoms, but my parents were clueless about what caused them,” says Abdul's mother, Meera Banu.
Abdul, 10 years old now, receives treatment at the Voluntary Health Services Hospital in Tharamani — where the Madras chapter of the Haemophilia Society is quartered — whenever he shows signs of internal bleeding. The Society is an oasis of hope for families battling haemophilia and financial insufficiency.
Abdul's father Usman works in a textile shop, and he struggled to meet the costs of treatment in August and September last year, when Abdul suffered from recurrent episodes of bleeding. The subsidised prices of factor concentrates for four strains of the disorder — Factor VIII (Haemophilia A), Factor IX (Haemophilia B), Von Willebrand's Disease and Antibody Factor (required when a patient's immune system develops resistance to Factor VIII and Factor IX drugs) — no doubt help such families, but they still feel the financial burden.
Take the case of lorry driver Pandiyan. Due to stiff competition in the load transport business, he brings home meagre earnings, a sizeable portion of which goes towards the treatment of his sons Kabilan (12) and Kuralarasuseran (9), both haemophiliacs.
“Since people with modest incomes seek help at the various chapters of the Society, spread across the State, we asked the State Health Department to provide the factor concentrates free-of-cost,” says R. Sathyanarayanan, treasurer, Haemophilia Society — Madras Chapter. “Responding to this request, the Department has set up a mechanism to disburse these drugs through the Directorate of Medical Education. Ninety per cent of the bureaucratic procedures have been completed and we hope the programme begins to function at the earliest. It will make a big difference for many families.”
Care, not scare
Since haemophilia is a genetic disorder without a known cure, the family of an afflicted child has to develop coping strategies. It has to watch out for situations that can trigger trouble for the child. “These children have to be prevented from playing contact sports,” says Sathyanarayanan, treasurer, Haemophilia Society — Madras Chapter.
Pandiyan, a father of two sons with haemophilia, has informed the physical director of the school his sons go to about the risks involved with certain sports.
A haemophiliac himself, Sathyanarayanan says, “Avoiding injuries can only reduce episodes of bleeding. Haemophiliacs bleed spontaneously. It helps if a parent — preferably, the mother — bathes the child so that she could look for swellings in areas prone to bleeding, such as the joints. Prompt treatment can prevent tissue damage.”
In the case of older children, they could be educated on how to identify subtle changes — called ‘aura' — that precede a bleeding episode.
“It is very important that teachers are aware of a child's condition. Treatment has to be ideally started within two hours from the onset of bleeding,” says Sathyanarayanan. “The family has to work at developing emotional closeness. Parents of haemophiliac children tend to become despondent and fretful. In many cases, the father blames the mother (women act as carriers in haemophilia) for the situation. This can scar the child irreparably. With right treatment and right attitude, haemophilia can be managed. I am 42, happily married and have two children. All this, because I had parents who cared.”
