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    Posted March 12, 2014 by
    GolnazKasra

    Awareness of SPS

     
    We are a community which we had found each other on Face book, we have rare disease called SPS (Stiff Person Syndrome), I had prepare my life story of my disease for awareness others who may suffer for such disease as Doctors may not be very much aware about it. So this way, we can find others and help them for the problem they are facing. We all have been diagnosed after long time, I've been diagnosed after 3 years. Most of those I know who are suffering of this disease are living in US, Some in Germany and UK. I'm trying to help others to be aware about us and what we are facing. Our page on face book is Stiff Person Syndrome, you can check with others that they have faced same things I'm showing on my documentary. I hope this would help others to come to know that even Big Problems are also not the real coz to stop them fighting. As I did and I won, and yet I'm taking medicine which is sort of different with others. Our Doctors are not that much profession on this disease as they may had only One patient in their whole profession life. But my Doctor, I am his second patient, as here is India, and the population is 1.2 Billion. So it is not unusual to me that I'm his second patient. So he immediately diagnosed me. and He gave me right medicine. Others are still getting IVIG every month or even less, which is very expensive. I just had once in the beginning of his diagnosis. So even doctors are not offering the right medicine, and patients doesn't have any other choice but accept it.
    Hope you would care about us and help us for introducing this disease to others and help us to find the better way to get rid of the pain which all My SPS friends are suffering right now.

    You can find my video on youtube from below link;

    http://www.youtube.com/watch?v=8Y0Kp8qZP3M

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