Seven years ago, I had the opportunity to see the former governor of Michigan Jennifer Granholm sign a bill into law designating February Craniofacial Awareness Month. Being able to witness change taking place that I was a part of at only 13/14 years old was incredible. For my first post this February, I want to introduce you to the condition that I was born with and ultimately the reason behind this blog.
First of all, craniofacial anomalies are a diverse group of deformities in the growth of the head and facial bones. These abnormalities are present at birth and there are numerous conditions, some are mild and some are severe and require surgery.
Like I said before, there are many different conditions that are in this group but I am going to educate you on the condition that I was born with. Crouzon syndrome is a genetic disorder characterized by the premature fusion of certain skull bones (craniosynostosis). This early fusion prevents the skull from growing normally and affects the shape of the head and face.
Many features of Crouzon syndrome result from the premature fusion of the skull bones. Abnormal growth of these bones leads to wide-set, bulging eyes and vision problems, eyes that do not point in the same direction (strabismus); a beaked nose; and an underdeveloped upper jaw. In addition, people with Crouzon syndrome may have dental problems and hearing loss. A few people with Crouzon syndrome have an opening in the lip and the roof of the mouth (cleft lip and palate). The severity of these signs and symptoms varies among affected people. People with Crouzon syndrome are usually of normal intelligence.
Crouzons is the most common craniofacial abnormality. Out of every million children born, 16 will be born with Crouzons.
This is a condition that has had a huge impact on me; physically, mentally and emotionally and throughout this blog, I will give you a glimpse of my life with this condition and the challenges that I have faced with bullying, self-confidence, and everyday life.
The title of this blog is Defying Society’s Definition of Beauty, and this month, I will use my story as an example of how society’s definition of beauty impacts someone who does not meet the criteria; a person who allowed society’s definition of beauty to define her.
I welcome you to my blog and I hope you enjoy reading my story and my perception of beauty. Please feel free to share with friends. Stay tuned for tomorrows blog post!