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about yourself

crs0614 Message
7 Aug 2009, 04:22 AM

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?
gmacgowan Message
3 Apr 2014, 04:36 AM

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 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.