Hi, a little about myself. I'm 26 years old. I have had many medical problems in my past, and some still on going. I was diagnosed as a new born with Marfans but did not fit all the criteria. It wasnt until April 2008 that a geneticist informed me that I had SGS. As I do research I find that I fit just about every category of medical problem listed. What about yourself? Do you have any further research on SGS?

Please join us! We have found a few others with SGS and have had a very hard time getting information about it. You are the oldest one so far!! We would love to have you join us on Facebook if you use it. at https://www.facebook.com/groups/1391983947709314/ Where are you located? I am in the United States and have an adopted daughter with SGS, I haven't found anyone else in the States.