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Thoughts about hope and hemophilia...

Unique, Misunderstood and an Anomaly

6/2/2021

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Destiny Caithamer was a shy kid with low self-esteem.  In an attempt to pull her daughter out of her shell, her mom, Celine Caithamer put Destiny in her first beauty pageant, where she was scouted by a photographer.  Today the 25 year-old is an international model and pageant queen.  Her Facebook page is decorated with gorgeous pictures from countless professional photoshoots and magazines.  She is living a life that most girls could only dream of and many would envy.  However, this is only part of her story and what lies beneath the surface makes Destiny feel less glamorous and more like an “alien: unique, misunderstood, and a bit of an anomaly.”

When Destiny started having unexplained bruises at the age of 5 months and was vomiting blood, her mom knew it was time to seek answers.  It was initially suggested that she might have had leukemia. After a couple of visits to the Comprehensive Center for Bleeding Disorders in Milwaukee, the family was invited in for an educational session.  

“They gave me all these words that I didn’t know, like von Willebrand Disease, factor VIII.  I didn’t know about the clotting cascade. It was all new.  It was all foreign,” says Celine.  Destiny was diagnosed with von Willebrand Disease, as well as factor VIII deficiency.  “I was relieved that it wasn’t leukemia.  Second thing I thought of was that I was completely ignorant on the issue. I couldn’t even pronounce the words they were using.”

Destiny’s normal childhood, despite her bleeding disorder, turned into shock and confusion when she started school as she struggled to fit in.  Her peers did not understand her disorder and thought because she had bruises on her legs that she was dirty.  Some kids refused to play with her.  It was difficult for her to be cast aside by her peers and she said she “always felt alienated.”
​

In third grade, Celine had someone go to school to talk to Destiny’s classmates about her disease.  Afterward, the teacher had everyone put their hands on the table and told the class to look around for the student wearing the special bracelet while attempting to explain the disease.  At a very young age, Destiny already knew the value of embracing her disorder even when others shunned her because of it.  “Kids thought it was a scary, bacteria, or an illness they could catch.  The way the teachers were describing it, if I were able to explain it to the class, I would have been able to explain it in my way, a way that kids my age would understand.”


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