A 15-year-old girl from Indiana with narcolepsy collapses whenever she giggles, leaving her body frozen but her brain still conscious.
Jordan Coomer’s unusual condition, called cataplexy, was discovered after she was diagnosed with narcolepsy, a neurological disorder that affects a person’s ability to sleep and wake.
Doctors have recorded her having 20-minute taps every 2 hours, which occurs when she’s eating or even during classes.
Narcolepsy is also linked to a viral infection. Jordan said she had a week-long throat infection one year before she was diagnosed with the sleep disorder.
Her two medical conditions have taken their toll on the teen.
“Adjusting to the disease has been hard; at first I was very upset and just couldn’t figure out why it had to be me,” Jordan expressed.
“I have dreams and want to do so much, and to learn that you have a disease that will ultimately affect the rest of your life and what you do was extremely hard.
“Over time, though, I’ve come to accept it and embrace it.”
It was in 2016 when Jordan’s problems started. Her mom, 50-year-old Victoria Coomer, said: “We attributed it to just growing up, but it continued to get worse.
“She was falling asleep in class, at the table when I was talking to her and when she was doing her homework.
“Any time that she was still, or it was quiet she would fall asleep. Her face would get droopy, she would slur her words and her jaw would go slack and she was having hallucination and nightmares.”
Narcolepsy affects one in 2,000 people in the United States. Its exact cause is still unclear but according to NHS, it can be caused by an infection, major stress, and hormonal changes.
“It affected her life very much; she didn’t want to do anything with her friends because she was tired all the time, she didn’t want to play any kind of sports, she was missing out on life because she was sleeping all the time,” her mom continued.
“She would cry sometimes because she wanted to do things, but she just did not have the energy to do it. She was sleeping her whole life away.
For months, the teen was taken to different doctors who ran multiple tests on her but no one could determine what was wrong with her.
In 2017, Jordan saw a sleep specialist and was finally diagnosed with narcolepsy, a sleep disorder characterized by sleep paralysis, excessive sleepiness, and in some cases, cataplexy – total or partial loss of muscle control.
“He told us she definitely had narcolepsy with cataplexy and there is no cure for it and that she would have it for the rest of her life,” Ms. Coomer said.
Jordan, who makes straight As in class, said she won’t let her condition affect her life.
“There are still so many things I can’t even explain or understand, but with time I’ll get it. One of the most important things to me is not letting the disease control my life and what I do,” she said.
“I play sports, I ride horses, I’m a straight-A student, I hang out with friends, and I live how I want to. I’m not ashamed of my disease and I never will be. It’s a part of me and it’s who I am.”
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