Shprintzen-Goldberg syndrome is a disorder associated with premature closure of sutures of the skull and marfanoid habitus.
We have a group on facebook. Suddently we are not alone: ) Shprintzen goldberg syndrom Greetings Lisbeth
I am on FB too https://www.facebook.com/ginger.macgowan?fref=ts If you want to friend me The othe people on the page are in Denmark mostly and one in France and just added one in Germany yesterday. It is very hard to find any one who understand this syndrome and will look at the child as a "whole". My daughter has had 2 cranio surgeries also, How is your son doing?
I did go on fb and ask to join. I have been in tears since I read the e-mail this morning! My son Adin is 5 in July, overcoming is what we do best over here! We struggle to find Drs. Who are willing to understand the uniqueness of this syndrome. Finding out that you have been in touch with Dr. Shprintzen is amazing! I'm amazed to find another person in the states as well... The overwhelming sense of "being the only one" was a tough pill to swallow. Can't wait to chat more!
I hope you join our FB group if not, I would love to talk to you hear. Finding people is difficult and navigating some of the sites can be difficult. I adopted my now almost 7 year old daughter who have Dx with SGS, and we have many issues and have overcome some issues, it is great to have someone else to talk to so you don't feel so alone getting thru some of the difficulties. Can't wait to hear more about your child!!!
I found you on FB!! I sent him (DR) an email and he responded their is a post on FB too from another mom who found him. He is very willing to communicate, I signed release forms and then I haven't heard back. I have several appts coming up, so I was going to wait until results to contact him again. My daughter has long fngers and toes and toes are now becoming hammered and locked, flat feet, deforming ankles, knees popp out of joint, she has 3 different curves of scholiosis (new xray) eye site is bad, Myopia, and Optic nerve hyperplasia, and Strabismus, she also has extrusion of the chest cavity, Craniosynostosis, was born with Gastroschisis, she is delayed in many areas. Like I said she is adopted, so she was also drug and alcohol exposed before birth, which may have different effects on her delays. Wow, that is all a mouth full. Haha. I sent you a FB request also, as that is much easier for my to log on to. But either way works for me. I just love having extra info and someone who understands the struggles we go thru. Your daughter is very cute by the way!
Hey! Wow ist amazing that you answered!!! I found the group on facebook and hope the administrator allows me to join:-) Rosalie also hat two cranio surgeries. And two oh i must look for the english words:-) she has got Arachnodaktylie hypertelorism and different problemes with her bones. Too many rips but no patella ( i really must get translated thi medical words:-) ) also she ist till now not able to sit alone. She has got a "hypertonie"(?!?). And what infos you got from dr Shprintzen? My Name is Maria Ryker at facebook! Please search me! I have got so many questions!
Oh thru this group we have also been in contact with Dr. Shprintzen!!!
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.
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?
Hi there. Sorry for my bad english. I am from Germany and my daugther Rosalie was born in November 2011. The first time no one knows what she had. They just listed some syndromes they knew. Then in September 2013, after a surgery in Berlin there came a doctor and she looked at Rosie an told us what she could have. And after taking some blood and an analysis we are sure that it is the SGS. Now we are searching for people with the same syndrome. In Germany there is no one:-( Please write me and tell me about your live with SGS :-)
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I am looking for other people who are in the same situation as we are. Not many people are diagnosed, so it is...
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