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Schwartz-Jampel Forum

last modified: 2012-06-22 11:22 AM

Due to unyeidling spam I've moved the forum to Google Groups at Schwartz-Jampel Forum. If you want to join just email me and I'll add you to the memberlist.

We also have a Facebook page.

The old forum is still visible to the public.

The Schwartz-Jampel Syndrome forum/message board is dedicated to the discussion of Schwartz-Jampel Syndrome. Please feel free to add your insights and experiences about SJS. As far as I know, the number of people with Schwartz-Jampel Syndrome is very small. I hope to give us all a way to connect to each other with this forum.

New Diagnosis

Posted by oski at 2005-05-15 12:06 AM
My six month son has just been diagnosed with SJS. We have lots of questions given the literature we have read so far. What is the best way to get in touch with others? We our not sure that the diagnosis is correct inasmuch as some of the described features are not apparent in our son, but the the physician making the diagnosis is well regarded.

I would be grateful if anyone who is either a parent of a child with SJS or someone with SJS would be willing to speak with me regarding their experiences and any advice they may have.