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Research...!
Join Facebook communities specific to SS and communicate with others who are in the same situation as you are.
SS is rare, and often you can feel alone, I did for over 10 years and it was scary! Talk to people and learn about your condition which will help you to learn to live with it. SS is not sweet! In fact it's horrible at times but knowing that your not alone makes you feel so much better... people want to help because we all feel the same.