NicoleDelien“IT’S HARD BEING A KID WITH KLS”

Getting through her episodes is one thing, but Nicole Delien, 15, from Pittsburgh, PA, also has to deal with the socially isolating aspect of KLS. The 10th-grader has lost many friends over the years, and says that all she wants is a normal teenage life.

My KLS symptoms began in April 2002, when I was six-and-a-half years old. But it wasn’t until two years later that I was officially diagnosed with the disorder. In the early days, my parents thought I was suffering from the flu or had some other virus, because my symptoms were flu-like.

I was misdiagnosed many times before it was confirmed that I had KLS. Doctors told me that I had West Nile virus (a disease spread by mosquitoes), viral encephalitis (inflammation of the brain caused by a virus), seizure disorder, confusional migraine or manic depression. Some also suspected Fragile X syndrome and acute intermittent porphyria, and of course, a few suggested that I might just be acting out to get attention.

My episodes used to occur every 10 to 14 days. Then, from Nov 2004, they came and went every nine months, until my period began in Jan 2008. Since then, my episodes usually come on within days after the end of each menstrual cycle.

I know I’m in an episode because I get really bad headaches, feel odd and cry a lot. I begin acting like a little child, and ask for food I don’t like or wouldn’t normally eat. My longest episode was 62 days, but if you ask me which episode was the worst, I’d have to say all of them. I hate having KLS; I hate how it steals my life away.

Growing up with KLS

My parents were relieved when I was finally diagnosed with KLS finally, we had a name for what I was experiencing. But, they were shattered when they found out that KLS has no known cause or cure.

The only support I have in terms of family are my parents and my two younger siblings, Savannah, who’s nine-and-a-half, and Cameron, six. My biological dad stopped talking to me when my episodes started. Most of my other family members don’t believe I have KLS even though they’ve witnessed my episodes. They think the doctors have it wrong about my condition.

How my school life’s been affected

I was a very active child I started dance classes at three-and-a-half, was into gymnastics, and, when I was eight, I got involved with cheerleading. All this stopped in my pre- and early-teens because of KLS. When I entered middle school, my episodes made it hard for me to attend cheerleading tryouts, and as a result, I missed out on the chance to be part of the squad.

It would be nice to have perfect attendance for a whole year or even a semester, but right now, I miss between 40 and 60 days of school a year. It would probably be more if most of my episodes didn’t happen on the days we had off. As well as classes, I have missed many school dances and activities.

Tough social life

KLS has not been kind to me in terms of my friendships and relationships. I had one guy who was fond of me, but unfortunately he lost interest during one particularly long KLS episode.

My episodes also cost me many of my childhood friendships. My parents tried to explain my episodes to my young friends and their parents, but I guess it was difficult for everyone to understand and accept what was happening. Now, however, I think some of my peers have an idea of KLS, thanks to my mom. She’s shared some websites and information with them.

I do have a couple of friends who are always there for me during an episode. They’ll call my mom if they notice I’m acting differently in class, or they’ll text her to ask how I am, and sometimes, they even visit me when I’m sick. Sadly, there are still kids who make mean comments about KLS because they don’t understand it.

I would love to just be a normal kid who can go to school, attend birthday parties and school functions, and participate in school activities. I miss cheerleading so much.

The kindness of teachers

My seventh- and ninth-grade teachers were extremely helpful and understanding. Due to my learning disabilities and KLS, I have an IEP (Individualized Education Program, also called a 509 plan), so they were pretty lenient. Depending on when my episodes struck, I have had entire semesters almost written off because there was no way for me to make up that much work. I did, however, have tutoring over the last couple of summers. This past summer, my teacher found out that I was in an episode and called my mom frequently to see how I was. She even came and spent time with me, and, knowing how much I crave sweets during an episode, brought me five boxes of it.

My parents make it a point to talk to all of my new teachers about my symptoms. It’s important for my teachers to know what to do when an episode hits.

My ideal life, after KLS

In my freshman year, I started half-day digital multimedia classes at a vocational school. Some day, I would love a job in this field, or perhaps a job that lets me work with kids.

After KLS has left, I hope to enjoy everything that life has to offer, including family vacations. My very first family trip was to Disneyworld, but I don’t remember what happened. I got into an episode the day we arrived in Florida and didn’t recover until just after we got home. My family travels to Florida every year, and it’d be great to go and not have to worry about KLS.

Article by: Alanna Wong Life

KLS Foundation

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