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Eva's Story

When I was 9, I underwent surgery to remove a metal wire  from my head, but this wasn’t my  first  time  on   an  operating table. That same wire was put in place 8 years prior following substantial reconstructive surgery to support my altered forehead plate.


Although the wire didn’t need to  be removed, it would constantly cause me dull head pain due to my cranial bones shifting as I grew older. This is just one way that craniosynostosis has  affected my life, as following the surgery, I’ve still  experienced some challenges surrounding my appearance and  condition. 


Although it might not seem like the most serious condition,   the same surgery I underwent  to treat it claimed the life of a young girl I was in hospital with at the time.    I know I am very lucky to have had a successful surgery  and yet, I can’t help but compare myself to people who aren’t affected   by  the   condition.  


My craniosynostosis was not genetic, and so sometimes I  contemplate how unfortunate I must have been to still be born  with it. 

Having metal wires in my head has meant that I could never get involved with practical science lessons involving electricity in school, nor was I ever allowed to attempt anything too physically demanding as a young child, such as cartwheels or handstands, for my mother’s fear of damaging my head. 

However, despite these minor setbacks, I’ve never actively faced discrimination due to my craniosynostosis, though throughout primary school, and for a while after, I was sometimes bullied for my appearance, even being told my face was “lop-sided”.  

As part of the active citizenship project in my school, we've been encouraged to campaign for a cause we're passionate about, and I know first-hand about the lack of  representation of visible difference  in the media.    The reconstructive surgery  required for craniofacial conditions  is often tortuous, and yet such conditions receive little to no media attention.   Even though the condition is far from mainstream, it still affects       roughly 1  out  of every 2200 live births.  And yet the only time I ever see people like me is in the waiting room of a craniofacial hospital ward! 


I can’t help but feel that if craniofacial differences were normalised, people wouldn’t find  them  so shocking, and thus people with visible differences wouldn’t feel so alienated and ostracised.  

By sharing my story, I hope to bring greater awareness to visible difference and  shed some light on the stigma associated with what is sometimes referred to as  ‘deformity ‘.  I also hope that more young people with similar  conditions will feel relieved that there are others out there  with craniosynostosis, campaigning for their cause. 

Although I’m not sure what I want to do in the future, I’m very passionate about art and I intend to take it to at least A-level, even if I can’t make a living out of it. The irony is, I solely draw or paint symmetrical faces. I think all faces are beautiful, even if not in a conventionally attractive way,  then at least in an artistic one.


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