“My name is Tara and I have Narcolepsy type 1 and Hyper Mobility Ehler’s-Danlos syndrome (HEDs). It took a long time to get diagnosed with both of these conditions and I got several misdiagnoses before getting finally diagnosed. Growing up I always felt like something was off but never knew what exactly was off. Just before I was two years old, I had strep a lot and a tonsillectomy right before I turned two. My parents told me that I was never the same after this and this is when my Narcolepsy symptoms began. I was misdiagnosed with ODD, ADHD, anxiety, and depression growing up until I was finally diagnosed at the age of 22. I was just recently diagnosed with HEDs and realized I have had symptoms since I was young. I was always flexible as a kid, had severe TMJ in high school, and was diagnosed with Fibromyalgia when I was 19 years old. All of these other conditions I have are actually from the HEDs and I do not actually have Fibromyalgia.
I am a big advocate for both of these conditions because it shouldn’t take this long to get diagnosed with a chronic condition. Rare Patient Voice helps me by having opportunities like this to advocate and tell my story. I like that Rare Patient Voice has different studies for multiple different conditions because it is a way we can get one step closer to more medications and other treatment options.
I never let my conditions stop me from doing what I want, but sometimes I have to do things a little different and it may take me longer to get things done. I am a full-time college student in the electroneurodiagnostic technology program, and I have two semesters left. My goal after I graduate is to work in research or as a daytime sleep technician. I work part time at the university hospital here in Iowa as a unit partner in the medicine specialty unit and as a monitor technician in the epilepsy monitoring unit. I have a dog named Dude who is a huge part of my life.”