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find any and all information you can about NS. seek out others on facebook and groups dedicated to NS and rare diseases. in hindsight I would have gotten involved sooner. instead of wallowing in self pity and feeling my life had ended. little did I know it had just begun. I was overwhelmed with information. take one symptom u have at a time and learn about it. reaching out to people is very important. don't try to handle it on your own. I sought out therapy because I was loosing my grip on sanity trying to deal with it on my own