My Life with Rare Disease: Cleidocranial Dysostosis

Anna Auteri

I am One in a million with Cleidocranial Dysostosis

Hi! My name is Ann. I am 21 years old, and I am from Ukraine. I was born with CCD (Cleidocranial Dysostosis), a condition characterized by defective development of the cranial bones and by the complete or partial absence of the collar bones (clavicles). It's a rare genetic disease.

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My Disability Gives Me Pride

Several months ago, I found Gaten Matarazzo, the actor from "Stranger Things." I realized that he also has CCD, which encouraged me to start a blog about my life with CCD. ( Anna_with_ccd on IG) 

I really like helping people, and I think it's a common rule to help others. I have a disability, and that gives me a sense of pride. Although the doctors encourage me to be a full-fledged member of society, I also want to prove to everyone that having a disability is not a life sentence. 

Of course, it's not all as rosey as it could be. Unfortunately in my experience, only a few doctors could tell me anything about CCD. I was very lucky, in a sense, because my mother had a part this syndrome, so it was  easier for her to educate me. She knew what to expect in every way.

I am Grateful to have Cleidocranial Dysostosis

I am currently working with people who have different types of disabilities. I am an actress in the theater, model, and have already been in films. I study at several universities and dream to become a famous actress and model.  I have known since my childhood that I'm not like everyone else, and I consider this to be a highlight. And most importantly, I love myself. I am even grateful to CCD for my compactness and memorable appearance.

We can change the world only if we accept each other 😉  I love myself I love my CCD, and I believe that my dreams will come true!!!


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