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Rare Disease & Syndrome

Tuğçe DEMİR

My Story is a Bony Stigma

Hello, I was born in Istanbul on 03.09.1993.  My story starts with a broken arm. When my parents washed me as a 15-day-old baby, they saw me crying hysterically and took me to the hospital. They noticed that my bones were broken, and after a short time we noticed problems in my stomach. I was diagnosed with Osteogenesis Imperfecta (glass bones) Type 1.5.

I came out of the surprise egg

I started my disabled life at age 10.  I have never seen my disease as a negatitve, which is said to be the effect of genetic factors.  I fought with my sensitive bones until the age of 14.  And hospital home life started 3 years later.  According to the words of my doctor, my  adolescent bones could be strengthened. I was fortunate and thankful, but of course I had 2 hip surgeries at the age of 20 years old because I had scoliosis.   I was quite careful for 1.5 years when I returned from the surgery.  By the beginning of the summer of 2016 I fell from my wheelchair and broke my spine and had surgery.  

I do not spend my life in an anxious state I must look and stay strong in my body.  It gives me great purposes that I can be my best in every way.  And I will not let go of my stilettos if I fall!

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