Hmm, it is unusual to hear of it just popping up like that, but it has to start somewhere though and if your Dh was adopted, it is possible that it is in his family somewhere. No one in DH's family has had surgery, as it isn't something that can be corrected by surgery. Dh's family and the kids have type A1, which is the lesser one in terms of disfigurement - they simply only have two bones in their fingers and not three which gives them one finger joint and not two (sometimes it can also be that the two bones on the end of the fingers are both really short and fused together, giving the appearance of only 2 bones). Lindsay was x-rayed at 2 days old and there were no other problems with him, but one thing that might happen in the future is that both Dh and his mother have trouble with their feet and wearing good quality shoes is a must as the bones in the toes and feet are affected too in some cases. It has been linked to chromosome 2q35-q37 and we were asked if we wanted to participate in a study of it, but we declined as we felt there was no need for it.

I am in the Riverina area of NSW, but I haven't come across any support groups as yet for it.

I will email you the links and they should get you started.