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.

Thanks