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Organization For Narcolepsy In India


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#1 MMK

MMK

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Posted 12 January 2011 - 02:08 PM

Hello Everyone,
1 year ago when Modafinil was prescribed to me , I came to know there is one disease called Narcolepsy on this earth. Dr. in diplomatic language said to me. Latter with time all my previous medicine were tapered out and kept on only medicine related to Narcolepsy . And now stabilized so happy.

In mean time I troubled few people on Narcolepsy Network and one Mali Einen And they really tolerated me a lot. Thanks for all those who tolerated my trouble. But when I started searching friends and learning more about Narcolepsy found one bad fact about Narcolepsy and my country India.

I was diagnosed in Nov. 2009 and first documented case of Narcolepsy in India was in Aug 2009. While searching some online communities in India found only 7-8 people who were in Narcolepsy community. Out of which only myself , was on proper medicine for Narcolepsy , remaining were not on medicine. Other was not given stimulant because his Dr. did not feel like giving it to him.


Dr. Meeta Goswami (origin from India) did help me a lot and I sincerely met only one Dr. after my Dr who did diagnosis whom I felt really knew Narcolepsy well that was Dr. B.S. Singhal (Regional director of World Federation of Neurology for Asian and Oceania region)

Some other Dr even made joke out of me , something seriously unethical in medical profession.

I have decided to start national organization for Narcolepsy in India in similar way your narcolepsy network exist. Narcolepsy Network exist for 21 years plus previous years when people met but now here it has just started.

I need someone who can make good picture and good website for our organization . Some artist who can contribute some sketches

Waiting for your positive response
Madhumilind Kamthe