How did we know?

For the first year and a half, my family and I were unsure of what was wrong with me. My dad unexpectedly came across an article in the newspaper titled, “Sleeping Beauty Syndrome.”

My parents told me to read it and highlight what was similar to my episodes. I ended up highlighting almost the whole article. We were then determined this is what I have.

Unfortunately, you can’t go to your doctor and tell them this is what is wrong. Our family doctor had never experienced a patient with it, so just like us, we had no idea where to start. After several tests, he sent us to a pediatric neurologist in another city since I was only 16. Once I turned 17, I had to go see an adult neurologist. Overall, I’ve been to see 7 doctors, only 2 of them have seen cases and the rest were not familiar with KLS.

KLS is incredibly hard to diagnose and I was fortunate enough to find an article in the paper, which lead me in the right direction.

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