A rare day to notice some really rare people. Rare Disease Day, which was first marked on February 29, 2008 with the objective of turning the spotlight on rare diseases, primarily in Europe, has now gained support and recognition across the world. Chennai has also joined in.
The rarest day was chosen and a logo created. Subsequently, every year, Rare Disease Day is being observed on the last day of February. According to raredisease.org, a disease or disorder is defined as rare in Europe when it affects fewer than one in 2,000; and in the US when it affects fewer than 200,000 Americans at any given time.
“Lately, there have been a few scattered rare disease-related activities in India on the day,” says D. Navaneetham, Director, Foundation for Research on Rare Diseases and Disorders, India.
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The foundation’s website contains details of the prevalence in the different States in the country, though any figure can only be an estimate.
Interestingly, a rare disease has also taken its name after the moniker that Chennai used to go by: Madras.
The Madras Motor Neuron Disease was originally identified in 1970, and about 152 MMND cases have been reported from India until 2009, and nearly all of them from the southern States. The thrust is on providing care for persons with these rare diseases, and not neglect them because they don’t add up in terms of volume.
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Before a commercial redefined MMR as Mosquito Mortality Rate, MMR stood for good old Measles, Mumps and Rubella — the vaccine against these three conditions.
When a baby is nine months old, he/she gets the measles shot. While measles vaccination finds place in the national immunisation schedule, the MMR combined vaccine that gives protection against all three, does not.
The Indian Academy of Paediatrics (IAP) has been recommending MMR at 15 months, and then, at five years. One of the reasons is the rising incidence of mumps. “We have been insisting the government include MMR vaccine in the national schedule. While we have found that the incidence of mumps is on the rise, we are also seeing that a single dose of measles vaccine was not sufficient to repress its recurrence,” says M. Singaravelu, president of IAP-Tamil Nadu State branch.
Paediatricians say that the awareness level among parents on MMR vaccine is reasonable in the city but many in rural areas miss out on this vaccine. Almost all paediatricians around the world are administering MMR vaccines,
P. Ramkumar, senior assistant professor of Institute of Child Health says. Protection against rubella is equally important. If a pregnant woman gets rubella fever, there are chances that the foetus will be affected by congenital rubella syndrome, S. Githa, neonatologist, says.
(Reporting by Ramya Kannan and Serena Josephine M.)