Crouzon’s syndrome is a genetic disorder characterized by the premature joining of certain bones of the skull during development, which affects the shape of the head and face. Many features of Crouzon’s Syndrome result from early fusion of the skull bones during development. Abnormal growth of these bones leads to wide-set, buldging eyes and vision problems cause by shallow eye sockets; eyes that do not point in the same direction; a beak nose; and an underdeveloped upper jaw. In addition, people with Crouzon’s Syndrome may have dental problems and hearing loss, which is sometimes accompanied by narrow ear canals. A few people with Crouzon’s Syndrome have an opening in the lip and the roof of the mouth. The severity of these signs and symptoms varies among affected people. People of Crouzon’s Syndrome are usually of normal intelligence.
<http://ghr.nlm.nih.gov/condition=crouzonsyndrome>
This syndrome really bothers me. Especially the last line of that summary. I think about how much the people who suffer with this syndrome will have to suffer the emotional and psychological truma of living with a disorder. Being on a non-ivy league campus I see people all around me who really don’t want to be here, I have an aquaintance who takes the easiest classes he can just so he will still be eligible to play foot ball, and yet there are people who suffer from disorders like these and are acutally intelligent. It makes me sad to think of how often people, and sad to say myself, mistakenly abuse their normality. I wish that life were more fair, or that there was an easier way of making judgements on who suffered and who thrives.
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August 29, 2007 at 5:05 pm
candar
Being a Crouzon syndrome patient myself, I unfortunately must say that you are right. Living with this is not fun. Especially when you are considered retarted by anyone who sees you for the first time. I can be inteligent, I can be a nice person… but even getting a good job is an ordeal for me, especially when most of the work adds say “pleasant behaviour and visage” as one of their criteria.
I am blogging about this syndrome and about plastic/reconstructive surgery, that I am undergoing just now.
July 3, 2009 at 2:03 pm
shote
As a cruzoun syndrome’s patient myself, I just wish to add my experience to yours, as to say our lives, or at least this aspect of life is shared by many of rare us 🙂
be at peace.
freesmile@nana.co.il
September 3, 2010 at 7:18 pm
Anonymous
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