Olivia is a student at Calvin University. She has two younger sisters and loves to paint, hand letter, and do crafty things like refurbish furniture. She enjoys hanging out with family and playing card games. Olivia has Kleine Levin syndrome, a rare neurological disorder that causes her to sleep for excessive amounts of time (up to 22 hours a day). Some of Olivia’s biggest supporters have been the incredible nurses who helped care for her when she was hospitalized. Inspired by the nurses who have walked with her on her rare disease journey, Olivia hopes to become a pediatric nurse herself.
Q: What do you want people to know about you beyond your rare disease?
A: My Christian community is a big part of me. I want people to realize that while I might be different, God made me and is a huge part of my life.
Q: Can you tell me about your rare disease and how would you define it?
A: Kleine Levin syndrome is a rare neurological disorder that causes me to sleep for excessive amounts of time (22 hours a day), have a distorted sense of reality, and have extreme mood swings. An episode for me typically lasts around a week but when I come out of it, it will normally take several weeks for me to feel like myself again. I’m definitely one of the lucky ones because some of my fellow KLSers can be in an episode for several months and not remember a thing that happened. I would also define KLS as being in a constant dream. When I’m sleeping, I’m dreaming and when I’m “awake” I feel as if nothing is real like I’m still in a dream. There is also no cure or prevention and only 1000 people in the world have been diagnosed with KLS. I’ve had 6 episodes within the past 4 years, and it’s been over a year since I had my last. I have also heard of KLS being called sleeping beauty syndrome. Many of my friends and I don’t particularly like that name because there isn't really anything beautiful about it.
Q: What was your diagnoses process like? Where you ever misdiagnosed?
A: I was very lucky to get diagnosed just over a year after my first episode, however the typical time to get diagnosed is about 3 or more years. Since there are no tests that can confirm one has KLS, doctors who’ve already seen patients with KLS are the only ones who can officially diagnose them based on a report. I was originally misdiagnosed with autoimmune encephalitis, a condition in which your immune system attacks healthy brain cells. I was given the highest dosage of steroids to try and treat it, but it made me gain a ton of weight. When my next episode happened, the doctors realized I didn’t have autoimmune encephalitis. Before I was officially diagnosed, they threw everything on the table like schizophrenia, tumors, inflammation hypothyroidism and many more.
Q: What is the hardest part about your rare disease?
A: I think the hardest part is when people tell me they wish they had KLS so they can sleep for weeks at a time. It's really frustrating because there's so much more to KLS and me than just sleeping for a long time. Another hard thing is realizing everything that I've missed out on because of KLS.
Q: Why did you agree to be a part of this project? Why is this important to you?
A: It’s one of my biggest goals in life to spread the word about KLS so when I heard about this opportunity I didn’t even hesitate. Also, this project is important to me because I know how scary it can be to not know what’s happening to you and to have no name for what’s controlling your life. It can be a huge relief to just have a name and a diagnosis for something.