Beginnings are always delicate, and this one is particularly so! I will cover my life living with this genetic syndrome. I am sure you can find much on the clinical aspect other places (I will leave a list for you at the bottom of the blog). But for me my life was one of broken bones, putdowns, rape,and predigest all through this I was struggling to be myself in a world where every one knew exactly what my life should be like. Except I had a different life in mind, I just wanted to be me, if I could just figure out who I was.