As per an estimate from the union ministry of health and family welfare, India could be home to over eight crore persons suffering from rare diseases - an umbrella term used to denote a spectrum of over diseases usually of genetic origin. Technical and inter-ministerial committees are already in place to evaluate the issue.
Excepts from the policy draft speaks for the higher risk of rare diseases in Indians. In this way, consanguineous marriages denote marriage between people who have descended from the same ancestor. Experts stress on prevention of the rare diseases for two reasons.
Secondly, there is no treatment available for a large number of these diseases. In cases, where treatment is available, the cost is exorbitant ranging from Rs 40 lakh to 1.
A rare disease is a life threatening or chronically debilitating condition that affects a very small number of people in population. They are often chronic, progressive, degenerative and life threatening. This study highlights reasons for hope. The 4. While the mechanism for this is unclear, this figure could be reduced through increased education of women intending to become pregnant to ensure their diabetes is controlled before and during pregnancy. In Australia, for instance, we do not have a clear picture of the types and frequencies of birth defects across the nation.
This is because we have state-based systems that collect different information. Birth defects are also diverse, affecting many different structures in the body. Each specific birth defect results from a different cause, most of which are genetic. Identifying the factors responsible requires each birth defect to be examined independently so that individuals with a particular condition can be grouped and studied together. This takes time, research and funding. Greater support for genetics research and information collection on birth defects would allow us to understand the origins of these conditions.
Only then can we be begin the task of intervention and prevention to reduce the burden of these conditions on health-care systems and families. If you have concerns about birth defects, please speak to your doctor. This article was originally published on The Conversation. Read the original article. We are a voice to you; you have been a support to us.
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Please use a genuine email ID and provide your name. Health Why we don't know what causes most birth defects Birth defects are a major cause of infant hospitalisation and deaths in the first year of life By Peter Farlie Published: Wednesday 14 June Birth defects are costly to manage in health care system and have an enormous impact on lives of children and their family.
Credit: Wikimedia Commons. When people began to notice that young women were having miscarriages, witches and spirits were blamed. He is a professor of mathematics at Vanier College in Montreal, president of the Canadian Coalition for Nuclear Responsibility and one of the best-known opponents of uranium mining. When the ore is crushed and the uranium is extracted with acid, the waste — and 85 per cent of the radioactivity that was in the ore — ends up in tailing ponds, says Edwards.
The U. Pregnant women and their fetuses are at particularly high risk from consuming contaminated food and water, says Edwards. Is this what is happening in Jadugora? Is radiation at the crux of the mystery of children with deformities and miscarriages?
Or is it a strange coincidence? Mining conditions began to improve in the mids. Workers were no longer allowed to take their uniforms home — they were washed at mine laundromats.
They now wear protective boots and gloves, Dias says. For example, the process to extract uranium requires conversion into slurry. The leftover sludge is sent to tailing ponds, which are supposed to contain the radioactivity.
In Jadugora, tailing ponds take up more than 65 hectares — and they are all uncovered with easy access for people and animals. There are some no-trespassing signs, but children still play cricket or hopscotch nearby. Another tailing pond a few kilometres away sits beside a busy street with pipes constantly delivering more sludge. The tailing ponds tend to overflow, especially during monsoon season, say villagers. If that happens, radioactivity can seep out and contaminate the groundwater and rivers.
River water is used for washing and bathing, sowing and irrigation — and sometimes for drinking. Trucks filled with yellow cake or mine waste trundle day and night along the highway. The cakes are covered with flimsy plastic covers; sometimes bits of rubble fall off. Uranium Corporation of India Limited has always maintained there is no radiation pollution in Jadugora and that its mining operations have nothing to do with the health issues.
The company did not respond to several telephone requests from the Star seeking interviews about workers, tailing ponds and health concerns. In March, it sent a notice to UCIL asking for an explanation for the deformities, cancers and miscarriages around the Jadugora mine.
It based the notice on local media reports , which included shocking pictures of children who were sick or deformed. The demand was made by the court unilaterally, without a filing by officials or victims, in what is known as a suo moto action.
According to local reports, UCIL told the court that the radiation emitted through its mining is under permissible limits and contained within a safe zone. The court refused to accept the submissions because they were old. In August, the court also asked that the company disclose the radiation levels and the presence of any heavy metals in soil and water in the cluster of villages around Jadugora.
It also asked UCIL to explain how it ensures the safety of those who live near radioactive waste. Birulee remembers his father bringing his uniform home for his mother to wash. There were no safety rules in place, no regular health checkups for miners. A report by the Indian Doctors for Peace and Development, a non-profit, found a far greater incidence of congenital deformity, sterility and cancer among those living within 2. Young women in villages close to the mine sites were also twice as likely to have a child with congenital deformities, the study said.
But UCIL has in the past cited a government-funded study that found no water contamination and said that illnesses in Jadugora could not be traced to radiation exposure. Critics, like Dias, say the study was conducted by the Mumbai-based Bhabha Atomic Research Centre, tainted by its association with the nuclear industry. There has never been a comprehensive health study. It would take several years, and require a small army of professionals.
Budhini Uram lives roughly three kilometres from the centre of Jadugora. She spends all day, every day taking care of her younger siblings Alowati and Duniya. She wakes them, helps brush their teeth, bathes them, feeds them three times a day and takes them to the washroom.
If they want to watch TV, she turns it on. If they want to sit on the veranda, she brings them out. If they are cranky, as they frequently are, she sits and tells them stories. She has no idea if they understand a word.
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