Kleine-Levin Syndrome Came Late, But It Won’t Rob Me Of My Future

Kleine-Levin Syndrome typically begins in adolescence, but Stacey Maltz started having episodes at 25. The disorder has affected her career, her relationships and her independence, but the 30-year-old respiratory therapist from Connecticut says she will not let it stand in the way of her dreams.

I started feeling unwell in the summer of 2006, when I was 25, but I experienced my first major KLS episode the following year, in December 2007. I have very little memory of what happened then; most of what I know is based on what other people have told me.

At the time, I was living with my then-boyfriend Alain. One morning he woke me up early; he’d cooked my favorite food for breakfast blueberry pancakes. I refused to get out of bed and instead turned over and waved him away. After a couple of hours, when I still refused to wake up, Alain picked me up and carried me to the kitchen table. He told me that I put my head down on the table for five minutes before getting up and going back to bed. I ended up sleeping the rest of the day. In the evening, Alain carried me to the living room so we could watch some TV together, but I just went to sleep on the couch.

It was the same story the next morning Alain couldn’t wake me up. He told me I was completely out of it; I just stared into space and couldn’t speak. He took me to the doctor, who knew right away that something was wrong. I was sent to the ER, where doctors performed a few tests on me. The results were inconclusive, so I was discharged the next day. Once home, I went right back to bed.

When I woke up four days later, I felt like my old self again, but I was very confused as to what had happened to me.

Alone and isolated

Alain and I broke up the following July. I moved out of our place and into my own apartment, where I experienced a few more episodes over the months that followed. Because I was living on my own, I don’t remember all the details of my episodes, except that I would drink half a gallon of juice upon waking up and behave oddly, as if I were a different person. My doctor referred me to specialists, who tested me for thyroid disorder, Addison’s disease (adrenal failure), brain tumors and psychological disorders. I was officially diagnosed with Kleine-Levin Syndrome in April 2010, when I was 29.

Up till this point, I’d kept my episodes a secret from my family and friends. My parents eventually found out when I didn’t show up to work one day. My boss called my mom, and my mom came to my apartment and saw me half-asleep. Later that week, when I was better, I told my parents what was wrong. Finally, I was not alone in dealing with the disorder.

KLS took away my independence and friendships

Last summer, I kept having episodes every few weeks. I missed work a lot as a result, and this led to financial difficulties. In the end, I lost my apartment and had to move back to my parents’ house. I’d been so used to doing things on my own, but now I had to rely on my family again.

I didn’t just lose days at work; I also lost many friends because of KLS. Many couldn’t understand why I was sleeping so much and thought I didn’t want to bother with them. But it was hard for me to have a social life because KLS takes a lot out of you, and I wanted to save my energy for work.

My worst episode ever

During the Fourth of July weekend last year, I slept right through my alarm and missed my shift at work, the fireworks, and my cousin’s cookout. I was living alone at the time. I remember crying because I was extremely hungry, but I couldn’t prepare a meal for myself or order any food. All I consumed was soda from my fridge. I was so weak and tired that I actually fell asleep in the shower.

I remember feeling very alone and frightened, and kept thinking I was going to die. Towards the end of the episode, when I was more alert, I managed to call for a pizza. When I was asked my address, I couldn’t recall where I lived! Luckily, the store had my details from a previous order, so they just pulled up my address from their records.

Over the years, I’ve noticed that my episodes have increased in frequency and intensity. However, this episode last summer was the worst. My last two episodes have been quite mild in comparison.

Building my support network

Before I was diagnosed with Kleine-Levin Syndrome, I hadn’t even heard of the disorder, let alone known anyone who had it. I checked out the KLS Foundation website and contacted Alanna Wong and Arielle Farber after seeing their videos. Alanna put me in touch with Derek Bee, another KLS sufferer who lives in Connecticut. When I found out that Derek stayed 20 minutes from me, we arranged to meet. It was awesome to be able to talk to someone who could relate to how I was feeling. Since then, I’ve spoken to many KLS patients and their family members over the phone or online. They’ve given me the best support.

I was my doctor’s first KLS patient, and he was pretty supportive too he researched the disorder for me and called other doctors around the country so he could learn how to help me more.

Looking forward to a brighter future

KLS is said to begin in your teens and end in your 20s or 30s, so I guess my case isn’t typical because my symptoms only began in my mid-20s. I’d enjoyed a pretty normal life up till then, so to have all that taken away has been hard to deal with. But I know I will beat this disorder and get my life back!

Someday, I hope to meet a nice guy who is patient enough and willing to understand KLS. I would love to get married and start a family. I also want to have a full and healthy social life again. I’d like to be able to work normal hours once again too.

What I miss most is dancing, so I plan to resume dance classes in the fall. I’ve been dancing since I was two, and in the last couple of years, I’ve just been too weak and tired to go to class.

I also miss having my own apartment. I miss the privacy and the personal space. When KLS has left me for good, I hope to be able to live alone again. It’s hard right now because I need to be looked after when an episode strikes.

Even though I’m already 30, there’s still so much left for me to accomplish, and I will NOT let Kleine-Levin Syndrome stand in my way. I am especially grateful for my episode-free days; I try to make the most of them because I love my life, and every healthy moment counts.

Article by: Alanna Wong Life

KLS Foundation

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