Born unlucky: Challenges people with rare diseases face just to stay alive


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“Of all forms of inequality, injustice in health care is the most shocking and inhumane.” Martin Luther King Jr’s famous saying found a mention in the introductory observations of Justice Manmohan of the Delhi High Court, while deciding on a writ petition on April, 17, 2014.
The “inequality, injustice” that Justice Manmohan was referring to was the plight of a 7-year-old boy suffering from a little-known and very rare genetic disorder called Gaucher’s disease (GD). This usually occurs in children, with the incidence of about 1 in 5,000 births. A delay in diagnosis or lack of treatment leaves the patient at risk of irreversible damage, which eventually leads to loss of body function and a painful death.

Source : http://indianexpress.com/article/delhi/rare-diseases-delhi-cost-of-treatment-gaucher-disease-4445068/

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