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It is without a doubt that appearance makes a significant impact on a person's life. This is the challenge that many patients with Craniofacial Disorders such as Apert Syndrome, would have to face.

But as they say, Beauty is in the eye of the beholder. What may be pleasing to one person could be an eyesore for the other. We believe that if people are made aware of these disorders, they would be treated with more acceptance and understanding by society.

Our dream is to create a support group for Filipino families dealing with Apert Syndrome or other Craniofacial Syndromes as well as to eventually create awareness and acceptance for our children. If you know of anyone with Apert Syndrome, please leave me a message so that we would eventually be able to form our own network. Thank you and God bless!

Friday, September 2, 2011

Craniofacial Acceptance Month

September is Craniosynostosis / Craniofacial Awareness month in the US.  Here in the Philippines, very few people are familiar with Craniosynostosis.  

Craniosynostosis is a condition wherein the fibrous sutures of the skull close earlier than normal.  This is a congenital defect that leads to an abnormally shaped head.  This occurs in approximately 1 out of 2,000 births.  If left untreated, it may cause severe and permanent damage, learning delays, developmental delays, facial abnormalities, cosmetic abnormalities and many other life-altering problems.

There are more than 180 identified syndromes due to craniosynostosis.  Among them are: Apert Syndrome, Crouzon Syndrome, Jackson-Weiss Syndrome, Muenke Syndrome, Pfeiffer Syndrome, Carpenter Syndrome, Fibrous Dysplasia, Treacher Collins just to name a few.  

A child with Craniosynostosis will need several major surgeries in his/her lifetime not only for aesthetic purposes but also for health reasons.  Despite their difference in appearance, they are just like any other  child.

This is why it is important to create acceptance for people with craniofacial disorders in our society.  Each one of us are different in our own ways.  For people with Craniofacial disorders, their differences are more visible compared to ours.  But behind the face is a heart of a human, caring, feeling, loving, just like you and me.  We are all of God's creations and so we are all perfect in His eyes.  Let us teach ourselves and our children to look beyond the physical differences.  Let us teach them not to stare and make side remarks but instead to ask about their condition, to learn about it so that they can understand, and eventually see that while a person may look different on the outside, in the inside, he or she can be just like you and me.


Video created by Melanie Roder

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