“Once, while playing I was wounded and the bleeding didn’t stop for two hours. I had to take injection to stop it. Since then, I have never played with my friends, scaring the pain I went through,” shared Umesh Patel (name changed), a 14-year-old boy with haemophilia.
Umesh is not alone. In Gujarat, around 5,000 men suffer from haemophilia. However, sadly, only around 1,600 people are officially registered as haemophilic patients.
Haemophilia is a genetic bleeding disorder in which patients bleed excessively. People with haemophilia (PWH) have prolonged bleeding either internally or externally. The ailment remains lifelong.
Haemophilia is common among men and in rarest of rare cases a girl suffers from this bleeding disorder. As per World Health Organisation (WHO) data, the prevalence of haemophilia is one among 10,000 people.
Lack of awareness and delay in treatment in prolonged bleeding in joints and muscles, increase the risk of disability and permanent failure of body organs. It may even be life threatening, informed Mukesh Kumar Rameshbhai Marchawala, a member of the haemophilia Society (HS).
“It can be as lethal as HIV/AIDS but many people because of social stigma and inadequate knowledge don’t go through regular check-ups which can be risky for them and their family members,” said Kiran Avashia, another member of HS.
“There are 13 factors in the blood, involved in the process of normal clotting of blood. The absence or deficiency of any clotting factor in the blood, usually factor VIII or Factor IX causes haemophilia,” said Avashia.
If managed well, by providing coagulation factor concentrates in sufficient amounts and through regular physiotherapy exercises, the patients can be saved from permanent disability and pain, said experts and doctors.
Pre-natal diagnosis can help in early identification if the baby is haemophilia. “If the mother is a carrier of haemophilia then we ask the couple to go for termination in a hospital,” said Marchawala.
Experts suggest girls whose brother has haemophilia should go through ‘carrier detection test’ to save her child from the pain.
Many doctors also lack knowledge which can delay treatment to needy patients. “In the medical syllabus, only a capture on blood clotting is mentioned which is insufficient for the treatment,” said MA Husani, president of HS in Ahmedabad and father of a girl with haemophilia.
Most importantly, even if people have knowledge about this ailment, many families especially in rural areas, can’t afford the costly treatment.
In this backdrop, a year back, the state government had initiated a programme in 12 government hospitals where these patients were given free treatment. “After years of struggle we finally managed to open this facility for poor and needy patients who can’t afford to go aboard for treatment. Every year a budget of Rs five crore is sanctioned by the government,” said Husani.
“The pain can be lessened by practicing physiotherapy and providing emotional support to PWH,” said Marchawala.