Narcolepsy Runs in the Family
I’m pretty sure we all have those strange family stories that get passed down from generation to generation, but I often entertained people with the stories of my grandfather. My grandfather was a novelty to me because I only have one actual memory of meeting him when I was maybe 5 or 6 years old. He lived on the island of Borneo, Malaysia, where my father was born, so I didn’t know him well.
We had many stories about him and his life, yet the one I remember the most was when grandpa woke up in the morgue one time. They thought he had died, and though I am not sure of the circumstances around the event, it always wowed my friends that I had such an interesting family story.
My narcolepsy symptoms
Fast forward some 20+ years, my grandfather had passed away years prior, and I have a diagnosis of narcolepsy. It took quite some time to know that my tiredness wasn’t just because I had a significant chemical exposure.
Less energy, sleep paralysis, and hallucinations
My body had recovered in many ways, but I still lacked the energy to do what my mother or other family members could do. My narcolepsy may have even started earlier, but it’s hard to tell because my memories and timelines have begun to jumble as I progressively grow in age. Regardless, I remember collapsing when I laughed as a teenager. I used to have issues stopping a laugh once it started. I had sleep paralysis and hallucinations that I still can’t talk about because I still question what was real and not real.
Excessive daytime sleepiness and cataplexy
My excessive daytime tiredness is the main symptom I have, but I also have had full body cataplexy events that I can recall as an adult. If I had cataplexy events in the past, they were only partially less noticeable. Though I had a situation playing ice hockey where I collapsed on the ice, and it took some time to get up after I had missed a critical shot and got really upset. Someone extracted me from the ice, helping me recover from the incident. When I was diagnosed with narcolepsy, it could only have been fated as I would further go through this journey with my son.
Stress, sleepiness, and my son
I have 2 children, boys ages 16 and 14. My 14-year-old lives with me, whereas his brother lives with his dad. When we moved into this separate living situation, we moved 500 miles from his dad, brother, and all our friends. The move was so stressful for us both, but I failed to recognize how much my son struggled with his tiredness.
He already had diagnoses of mild obstructive sleep apnea (OSA), depression, and general anxiety disorder, so it seemed normal for him to be tired. The move did not go smoothly, but we finally got things settled or as best one can under such difficult situations.
I see my son's struggles
A year has passed, the world seems to be collapsing about us with the current events happening, and my son continues to struggle. I had started an individual education plan (IEP) with the school system at the end of last year, hoping that this year would start better, but in a way, that didn’t happen, and it took until the first quarter of this year to get things started.
His grades are the worst he’s ever had despite medication therapy, counseling, and the current help structure from the school. The IEP isn’t done being drafted yet, but I know that he is having the same issues I have. Difficulty waking up in the morning, tiredness throughout the day, and he will often just nap regardless of what needs to be done, sometimes sleeping through the night to the next day.
Could narcolepsy run in our family?
After joining a support group, I found out that I really should get him tested for narcolepsy. I forgot the story about my grandfather for quite some time, but once I spent time thinking about it, I realized that narcolepsy could be genetic in our family.
Not a lot of scientific data is available because narcolepsy isn’t consistent across families, but as we have Asian genes, and my diagnosis confirmed, the likelihood drastically increases.1,2
Knowledge is power
Though I hope the test for my son comes back negative, the evidence and his history of tiredness make me think he also has narcolepsy.
It’s a tough place to be as a parent realizing your child may have a genetic disorder that you handed down to them, but I can say with this knowledge, I can help my family look for ways to provide a better quality of life than I have had. With knowledge, I have the power to tackle any adversity, whether in the family or not.
Has anyone in your family been diagnosed with narcolepsy or been test? Share with us in the comments below
Do you feel that others judge the severity of your narcolepsy based on how you look?