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Tara O'Connor

Narcolepsy Community Advocate Tara O'ConnorMy name is Tara O’Connor. I am almost 24 years old and I have narcolepsy. I am a volunteer EMT, auntie, and narcolepsy advocate. I went well over half of my life having symptoms of narcolepsy and getting a wrong diagnosis.

Before I was diagnosed with Narcolepsy, I always felt like there was something off with my body. I went to numerous doctors, had countless tests done, and tried way too many medications, all because doctors “thought” I had other conditions. I never heard the word narcolepsy other than maybe in movies before my doctor had brought it up. When they told me that my MLST showed I do have narcolepsy, I was in complete shock. I had no idea what was going to happen next. I had no idea how many lifestyle changes I was going to have to make. Some good, some difficult, some that sounded nearly impossible.

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I still to this day know zero people who have narcolepsy besides online. I still feel very alone in my journey, but as I learn new things daily about narcolepsy, I am able to share more and more about it. What I learned going through this journey alone, is that listening to your body and advocating for yourself is so important. It is not an easy thing to do, believe me. I am slowly getting better at it and will continue to every day. My biggest goal is to someday, be able to have a job that allows me to spread awareness full time. I am very passionate about what is important to me. Just remember, no one is alone, and we truly are all in this together.

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