New Delhi:
MPS or Mucopolysaccharidoses is a rare genetic disease that affects one in 25,000 children within the first year of birth. Over the years their condition can worsen without treatment, which has only been found in the last decade but is expensive and consequently out of reach for most.
On World MPS Awareness Day, families of patients came together to highlight the urgent need for government intervention so that some of their burden can be lightened.
NDTV met Ibn-e-Hassan and his wife Mainooni from Moradabad. Once a month, they travel to the national Capital from Moradabad in Uttar Pradesh to get their two sons treated for MPS. They understand all too well the trauma of dealing with it - they've already lost a nine-year-old son to it.
Ibn-e-Hassan says, "Every time I spend Rs 4000 on a trip. As a labourer I barely make enough to feed the family. But we are trying our best."
Advertisements in newspapers on MPS Awareness Day, many parents feel, are nothing but tokenism. There is an urgent need to tackle this rare and fatal genetic disease through awareness.
MPS is caused by a deficiency in an enzyme that breaks down sugar molecules. It affects both children and adults though symptoms are not immediately detected at birth but start showing up within the first 10 months after birth. And the treatment doesn't come cheap.
Dr IC Verma, Director, Centre for Medical Genetics, Sir Ganga Ram Hospital says, "When the government says it is going to cover the entire population under its health plan, children with MPS also need to be covered. It's a rare disease but living with it is very difficult. There are some drug companies that on their own have decided to give free treatment to a few children, we need more like these to come forward."
Dr Ratna Dua Puri, Senior Consultant adds, "Treatment is expensive. A cure to MPS has only been found in the last decade but treatment is expensive. But apart from just the treatment there is also support that is needed for families dealing with this condition."
Doctors say it is only through consistent treatment that children with MPS can survive. Progressive degeneration of key body functions means the treatment costs can be anything between Rs 30 lakh to over a crore. What's more, it has to be repeated every year. No wonder then that for 22-year-old Dharmendra Kumar, also diagnosed with MPS continues his fight to ensure that unlike him, his five-year-old brother can at least get timely medical attention that can help him lead a somewhat normal life. Dharmendra Kumar is already losing vision in both his eyes, and though his brother Vishal doesn't show any pronounced symptoms, Dharmendra says he's already seeing the signs. "I've made repeated appeals to doctors to treat him. With my stage of MPS, treatment costs can jump to many lakh rupees per year. But if he gets early treatment, he may be able to live as normally as it may be possible."
For many, even pronouncing Mucopolysaccharidoses is perhaps a difficult task. Then imagine the trauma of those who live with it, knowing fully well that it's rare, potentially fatal and treatment is often out of reach.
On World MPS Awareness Day, families of patients came together to highlight the urgent need for government intervention so that some of their burden can be lightened.
NDTV met Ibn-e-Hassan and his wife Mainooni from Moradabad. Once a month, they travel to the national Capital from Moradabad in Uttar Pradesh to get their two sons treated for MPS. They understand all too well the trauma of dealing with it - they've already lost a nine-year-old son to it.
Ibn-e-Hassan says, "Every time I spend Rs 4000 on a trip. As a labourer I barely make enough to feed the family. But we are trying our best."
Advertisements in newspapers on MPS Awareness Day, many parents feel, are nothing but tokenism. There is an urgent need to tackle this rare and fatal genetic disease through awareness.
MPS is caused by a deficiency in an enzyme that breaks down sugar molecules. It affects both children and adults though symptoms are not immediately detected at birth but start showing up within the first 10 months after birth. And the treatment doesn't come cheap.
Dr IC Verma, Director, Centre for Medical Genetics, Sir Ganga Ram Hospital says, "When the government says it is going to cover the entire population under its health plan, children with MPS also need to be covered. It's a rare disease but living with it is very difficult. There are some drug companies that on their own have decided to give free treatment to a few children, we need more like these to come forward."
Dr Ratna Dua Puri, Senior Consultant adds, "Treatment is expensive. A cure to MPS has only been found in the last decade but treatment is expensive. But apart from just the treatment there is also support that is needed for families dealing with this condition."
Doctors say it is only through consistent treatment that children with MPS can survive. Progressive degeneration of key body functions means the treatment costs can be anything between Rs 30 lakh to over a crore. What's more, it has to be repeated every year. No wonder then that for 22-year-old Dharmendra Kumar, also diagnosed with MPS continues his fight to ensure that unlike him, his five-year-old brother can at least get timely medical attention that can help him lead a somewhat normal life. Dharmendra Kumar is already losing vision in both his eyes, and though his brother Vishal doesn't show any pronounced symptoms, Dharmendra says he's already seeing the signs. "I've made repeated appeals to doctors to treat him. With my stage of MPS, treatment costs can jump to many lakh rupees per year. But if he gets early treatment, he may be able to live as normally as it may be possible."
For many, even pronouncing Mucopolysaccharidoses is perhaps a difficult task. Then imagine the trauma of those who live with it, knowing fully well that it's rare, potentially fatal and treatment is often out of reach.
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