A Face for Picasso: Coming of Age with Crouzon Syndrome by Ariel Henley

In this touching memoir, Ariel details the horrors of growing up with "Crouzon syndrome -- a rare condition where the bones in the head fuse prematurely. " She tells about the trauma and PTSD from having to have multiple surgeries throughout her life along with her twin sister, who has the same syndrome.  Along with the physical trauma they suffered the psychological trauma of being called monsters, looked upon as having lower intelligence, and of looking in the mirror and seeing a stranger after surgeries that were necessary to keep them alive and to try to make them look more "normal".  The story is well written and I highly recommend it.