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I am just living life the best way I know how. #Crouzon’s Syndrome

By: Liezel

My name is Liezel, I am a 30-year-old female living with Crouzon’s Syndrome.

Crouzon’s Syndrome is a rare autosomal dominant genetic disease affecting 1.6 out of every 100,000 people. The current research indicates fibroblast growth factor receptors(FGFR) FGFR2and FGFR3as the leading factors for Crouzon syndrome.

I have had numerous mid-face, head and frontal sinus surgeries, because my mid-face is so concave I have been struggling with chronic sinusitis and facial pain and pressure for a long time.

Each day is different… Because one morning I can wake up with no pain and other days my breakfast includes Genpayne. I am currently upgrading a few science subjects in the hopes of applying to university. I would like to become a genetics counsellor and do a co-major in medical genetics. Other than that I am just living life the best way I know how. You can keep up with me on my blog

Liezel Wakens

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