My Life with Crouzon Syndrome
Hi I am Jenny and this is my story about living with Crouzon Syndrome. Two of my children and myself have this syndrome which is a craniofacial condition. It affects the growth of the bones in our skull and face. Even though we all know that there is more to a person then the way they look, most people are judged initially on their appearance and being born with a face that is different can make life challenging and difficult. Your face is always on show and it is very hard to cover it up. I have included in this website a lot of information about what Crouzon Syndrome is and about living with it from my perspective. Please seek professional medical advice if you or your children have Crouzon Syndrome as I am not a doctor. I have written this information with the aim to inspire and help other people with Crouzon Syndrome or similar syndromes to find strength and courage to keep on stepping out into the world.
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Last updated 2nd of October, 2008
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