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9/26/2014  |   2:15 PM - 2:45 PM   |  Topical Session 3   |  Idaho

My Story

My parents always told me that I was born with CMV, that I was just a very sick baby. They explained that my birth parents had decided to give me up because of this and that doctors did not think I would have a good outcome. My mom always talked about driving me to the hospital everyday to receive treatment, and my dad would joke about how I was so small he could hold me in the palm of his hand. For many years I was satisfied with these answers and never questioned it, I was born with CMV and that was that. All I knew was that CMV was the reason why I have hearing loss, bad eyesight, muscle problems in my legs, and also a cyst in my brain. It’s also why I have had to endure two eye surgeries and surgery on both my hips. Last year when I started at Gallaudet University I decided that my parent’s answers no longer satisfied me, I wanted to learn more about CMV and I had the opportunity to through research for a freshmen English paper. I had a lot of questions: what is Cytomegalovirus? What are the symptoms? Is there a cure? Is there a vaccine for infants? Is it contagious? Could it affect my sex partner? Could I really have died? After my research I was happy to know CMV was not genetic, I always had a fear of passing it on to my children. I also was glad to learn that there are people working on a vaccine. My goal with presenting at the conference is to let doctors and parents know that better outcomes are possible. Their are CMV success stories, I am proof of that. It is important that you don’t just give up!

Kayla Dufrene (Primary Presenter), kayla.dufrene@gallaudet.edu;
I was born with CMV and have had to endure a lot because of it. I was adopted because my birth parents were scared of the outcome. I am currently a sophomore at Gallaudet University majoring in communications with a minor in government, and will be a junior this fall. I didn't know much about CMV before deciding to do research for a class paper. What I learned has helped me to learn about myself and why I am who I am and the decision my birth parents made to put me up for adoption. I want to encourage parents to do their research and to learn more about CMV. I want doctors to be more involved with looking for a cure for CMV.

ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.

Presentation:
345KaylaDufrene.pdf

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