My name is Justice Faith and I am 17 years old and a senior in high school.
I have…
Prader-Willi syndrome,
Narcolepsy with cataplexy,
Scoliosis,
Gastroparesis, and
Central adrenal insufficiency
I have been dealing with many health issues my whole life.
Because of my rare conditions I have many fears. I worry about my health, school, friends, and most of all my future.
Ever since I can remember I have been tired. Not the kind of tired you feel when you stay up too late or how you feel at the end of a busy day. The tired I feel is more like how you would feel if you were forced to stay awake for days. This feeling would keep me from doing most things and if I tried to do anything fun, I would fall asleep while doing them.
The really tired feeling was bad, but I would also lose control of all my muscles when I laughed or experienced strong emotions. I was fortunate that this happened to me in front of my neurologist, he took it very seriously and worked to find an answer. I was 5 when I was diagnosed with type 1 narcolepsy (narcolepsy with cataplexy).
Symptoms of narcolepsy are excessive daytime sleepiness, sleep paralysis, disrupted sleep, hallucinations around sleep, brain fog, and cataplexy. While not everyone gets all of these symptoms people with narcolepsy may experience one or all of them. I am one of the lucky ones, I got all of them.
I think the hardest part of having narcolepsy is that I missed out on so much until we found the right medication. It wasn’t that I didn’t want to do things, my body physically couldn’t. I missed out on so much school and even when I was there, I had a scheduled nap in my day.
Having a rare disease has taught me that not everyone in the world is accepting and that I will always need to fight for everything I want. I have learned that people can be mean, especially if they don’t understand something. I have learned to sit through countless doctor appointments and therapies and I have had more tests done than I can count. I have also learned that every person is unique, every person has value and that everyone has a story to share, we just need to listen.
Growing up rare has also given me opportunities that I would have never had if it weren’t for my diagnosis. I have friends all over the world and I have been fortunate enough to travel to see some of them. I have met people with other rare diseases who have shown me courage and how to smile no matter what happens. Growing up rare can be difficult but it’s all about attitude. I know that being positive and sharing my story with others will give someone else the hope they need.
September 22 is worldwide narcolepsy awareness day. Please take a few minutes to learn about this rare disease.
– Contributed by Justice Faith Rickenbach, PWS and Narcolepsy Community Advocate