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Hunter Syndrome: What can we do?
Highlights
Hunter Syndrome: What Can We Do?, Hunter Syndrome, Genetic Disorder. 11-year-old Arian is suffering from Hunter Syndrome. It is a rare genetic disorder passed from mother to son. It can cause distinct facial features, an enlarged abdomen, limited range of motion, developmental delays and nervous system problems.
11-year-old Arian is suffering from Hunter Syndrome. It is a rare genetic disorder passed from mother to son. It can cause distinct facial features, an enlarged abdomen, limited range of motion, developmental delays and nervous system problems.
This is one of the rarest diseases in the world. Estimates suggest that there are around 2000 people in the world who are affected by this disorder.
"It's like all that extra stuff that you put in your house that you accumulate in your basement or garage. So these molecules are stored in places where they shouldn't be stored because normally, they're broken down,” explained a Geneticist.
Arian’s father, Sib Sankar Chowdhury, witnesses him son struggling with his life everyday, battling this disorder. The most unfortunate aspect of this disease is that there is no cure. Sankar’s son has to get enzyme replacement therapy done every week to manage the disorder.
Most countries have subsidised treatment for Hunter Syndrome, but this is not the case in India. Many patients die young because the treatment is very expensive. Sankar pleads that he didn’t want to lose his son and has thus come up with a novel idea for which he needs our support. No, he doesn’t want us to donate for the treatment, but wants to take up the cause so that others suffering from the syndrome do not undergo the same trauma.
Sankar says that Ghulam Nabi Azad, Union Health Minister, has the power to subsidise treatment for Hunter Syndrome. So he has started a petition on Change.org, the popular petition tool website, asking the health minister to subsidise the treatment for Hunter Syndrome patients in India, and save Arian’s life.
In order to live, Arian needs to undergo an enzyme replacement therapy developed by Shire, a US drug company. But the medicine is very expensive and impossible to find in India. If this treatment is subsidised in India, anyone suffering from this disease will be able to afford it. Over the years Arian’s health has deteriorated drastically. Over 44,000 people have already signed the petition and Sankar needs to have 50,000 people sign up the petition so that it could be forwarded to the health minister.
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