From isolation to support: Thriving with narcolepsy in childhood and beyond
Key Takeaways
MDLinx is shedding light on narcolepsy by sharing real-life accounts from patients who have experienced the challenges of living with this widely misunderstood condition. Narcolepsy is a neurological disorder of the sleep and wake cycle, affecting approximately 200,000 Americans.
This article is based on the experiences of Kenya Gradnigo, who was diagnosed at nine years old with type 1 narcolepsy (with cataplexy). Kenya currently lives in Louisiana, where she earned her Master’s Degree in social work and serves on the board of directors for Project Sleep.
I believe the person has the disability. The disability doesn't have the person. That’s why I tell parents of children with narcolepsy to focus on their child’s abilities and strengths and to ask questions, especially when it comes to treatment. Narcolepsy doesn’t just affect the child but also the family. My parents had to wake me up in the middle of the night to give me medication. Since narcolepsy meds weren’t necessarily geared toward children when I was growing up, there were always a lot of side effects and trial and error.
My mother used to get notes from my grade school teachers about me sleeping in class. Fortunately, I was a good student with good grades, so I never got in trouble for falling asleep. I actually ended up getting tested for the gifted program because the teachers thought I was bored. As a result, I was able to go to a different school and participate in gifted classes.
So, my mom took it upon herself to research excessive sleepiness in children and discovered narcolepsy. As my mother continued to research, she eventually found a doctor in our area who diagnosed and treated sleep disorders. Before long, she set up an appointment.
"I also encourage parents to be bold, advocate for their children, and teach them to self-advocate."
— Kenya Gradnigo
I lived in such a remote area that it was hard at first. Not many doctors specialized in narcolepsy who also treated children. We had to travel 50 to 100 miles to see specialists. The appointment times were tough. My mom would have to pick me up from school early to make it in before the office closed. There were also a lot of early appointments that would cause me to miss or be late for school.
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Being diagnosed so young, the medical terminology was confusing. As a child, you don’t know what the big words mean or how narcolepsy will affect your life. In the very first appointment after being diagnosed, I felt like I was sitting there and watching two people speaking in a different language. I’d ask my mom after the appointment what the doctor said, and she explained to me that narcolepsy was the reason I was feeling tired during the day. She told me I would have to make some lifestyle changes and take medications to help me stay awake during the day. Fortunately, my mother broke it down for me in ways I could understand.
Healthcare professionals who treat children with narcolepsy need to be patient. Don’t just speak to the parents, but speak to the child directly so they can start to understand their condition.
Fortunately, as long as I was in school and college, I had accommodations to help me through those bad days when I wanted to stay home. I'm glad my parents didn't let me skip school because it taught me to be a hard worker despite having a disability. My parents instilled in me that the only way I was going to learn to live with a sleep disorder was to continue doing what I needed and wanted to do.
My teachers were very understanding. They would tap me on the shoulder, offer me caffeine, tell me to go for a walk or splash water on my face if I struggled to stay awake. If needed, I was given extra testing time, and they always worked with me. Sometimes, teachers would have me stand up in class to stay awake. The kids would call me “Sleeping Beauty,” which was a little embarrassing.
As I got older, I tended to isolate myself from social events because I’d rather be home sleeping or somewhere I could nap. I was ashamed people were going to tease me because of my diagnosis. As a result, I started to distance myself from friends and social gatherings. I used to beg my mom to come up with an excuse to tell my friends I couldn't hang out with them.
But when I was around 16, I started to understand narcolepsy better. I told my closest friends, and they didn't judge me. My friends would work around my nap schedule and hang out at my house. If we were driving somewhere far away, they’d let me sleep, and they’d drive.
Now, I know I have a top-tier support system. My family, friends, significant other, and coworkers all support me. Whether it's not calling me at certain times of the day because they know I have to take a nap or attending one of my speaking engagements to spread the word about narcolepsy, I know I can always count on them. They are patient with me. They push me to be better and motivate me. I am forever grateful for them.
When I was diagnosed, healthcare professionals didn’t know as much about narcolepsy, especially cataplexy. In addition, we didn’t have a network of people with narcolepsy to connect with. It wasn’t until adulthood, when my story came out on social media, that other families started to reach out to me and my mom for advice. Then, in 2015, I became involved in Project Sleep to raise awareness and advocate for others with sleep disorders.
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