Treatment, awareness can save haemophilic patients

WorldHaemophilia Day In Gujarat, around 5,000 men suffer from haemophilia, a geneticbleeding disorder in which patients bleed excessively
“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.

‘122 mothers die per one lakh births in Gujarat’

National Safe Motherhood Day Say experts who alsobelieve that government’s maternal health programmes need improvement

 Despite initiating several hyped maternal health programmes, the Government of Gujarat has failed to reach the targeted maternity mortality rate (MMR) under the Millennium Development Goal (MDG), claim experts working for the safety of motherhood across the state.

On Nation Safe Motherhood Day, dna spoke to a few experts on maternal health, who stated that the administration has launched a number of innovative schemes, like the Kasturba Gandhi Poshan Yojana and Bal Sakha Yojana, but it is still a challenge for migrating, marginalised women and their families to avail their benefits. “MDG has set a national target of MMR to100 per one lakh births. But, according to the latest data released by the Registrar General of India in 2012, the mortality rate in Gujarat is still 122 per one lakh births,” said Dr. Harsha Shah, a gynecologist who works for maternal health.

Big question: Who moved the condom vending machines?

Asmany as 11,000 CVMs go missing across the state; activists blame it onmismanagement and poor maintenance

The use-and-throw policy applies to condoms. But in Gujarat, it seems to be applying to the condom vending machines (CVM) as well. For, a total of 11,000 CVMs have gone missing or stolen from across the state.

Across the globe, condoms have played a major role not only in curbing the spread of deadly diseases like HIV and AIDS, but also in avoiding unwanted pregnancy. Hence, National Aids Control Organisation (NACO) in association with public sector Hindustan Latex Limited (HLL) came up with the idea of installing CVMs.