I'm 1 in 2 Million: Are You?

Hi, I’m one in two million and I am looking for the other (approximately) 3,500 people in the world like me.  Now, if we factor in that only about 35% of the world has access to the Internet, I will be lucky if I am able to reach 1,125 of you.  I’m not even going to try and factor in and account for all the different languages out there (the translator button should be in the upper right hand corner).

Anyway, you probably are curious as to whether or not you qualify as one of my special 1,125 people out there.  Well, I am looking for people with rare genes – well, specifically one gene.  I am looking for people who have the awesome ability to say that they have one of the following:  Cleidocranial Dysplasia(CCD), Cleidocranial Dysostosis, CLCD, Dysplasia Cleidocranial (someone thought they were being clever here, I think), or Marie-Sainton Disease.

Basically, these are all terms for a rare genetic bone disorder that I also happen to have.  I am sort of a scientifically minded person, and am very frustrated that there isn’t a lot of literature with regards to this disease.  Surely someone else would like some new and updated information too?  At least for the sake of curiosity!  Now, I get that this isn’t exactly a prevalent world disorder, so it’s not a hot topic to do research on; however, I am SO curious how other people are living and to what degree this effects them (and also to make sure you are taking lots of Vitamin D). 

So if you could, please pass this around so we can find each other.  I want to hear about your life stories, what you’ve had to go through, any “cool tricks” you can do (our shoulders can be pretty freaky), if you’ve had to do extensive orthodontic surgery (which is a bitch and a half).  Also, it would be nice to have someone to compare and contrast the little things that we may experience (random bone pain, anyone?).  It would be much more interesting to get some real life info from people rather than reading case reports (snooze).