It is uncommon enough that it is included on the National Organization for Rare Disorders website. So little is known about it that the Mayo Clinic lists “public misunderstanding of the condition” as a complication. Though it is not likely to be deadly, it’s a condition that can make people prone to accidents.
Narcolepsy affects about 1 in 2,000 people, according to the National Sleep Foundation. People with narcolepsy do not simply sleep excessively or suffer from fatigue; some narcoleptics also have cataplexy — muscle paralysis when they feel a strong emotion — and some have sleep disturbances and hallucinations when they are awake.
Husband and wife Robby and Katy Roden, owners of 3Z Realty in San Marcos, have narcolepsy. And as the name of their real estate company implies, they work to inform people about the condition and support narcolepsy research. Every year on Narcolepsy Awareness Day — the day when Daylight Saving Time begins and everyone loses an hour of sleep -— the Rodens hold a “Suddenly Sleepy Saturday” event at the 3Z Realty office (2706 Hunter Road) to raise money and awareness. This year’s event is scheduled for 5-10 p.m. on Saturday, March 9, and will include a painting class, pajama party, food and entertainment.
Because so little is known about narcolepsy among the general public, it can take years to get a diagnosis, the Rodens said.
“It was actually my freshman year in college when I was diagnosed,” Katy said. “I guess it had started in high school but I didn’t notice because I was so active, I thought I was just doing too much.”
During her freshman year, she experienced hypnagogic hallucinations — one of the symptoms of narcolepsy.
“When you fall asleep, your dreams come into reality, and it’s terrifying because you think it’s actually happening,” she said. “I’ll see crazy visions, people coming and sitting on my chest … my roommate thought I was going crazy, and so did I.”
Robby said his diagnosis came after he and Katy had started dating.
“When I was 18, I had mono, and for like a year, year and a half, it felt like the symptoms never went away,” he said. “… I lost this energy and drive, and my memory was bad. Even all through college I tried to do research on why did mono affect me in a way it didn’t affect many other people. After years of trying to figure it out, I just gave up.”
Robby said that doctors put him on medication for depression and other medications, but, “I didn’t react well to it.”
Robby said that in college, he would find places to take naps on campus.
“It was like a countdown timer. I had to go to sleep,” he said.
The couple met when Katy went to Robby’s real estate office to buy a house. They started dating, and she became his assistant.
“As she was watching me work and go through my life, she said, ‘Robby, I could swear you have a sleep disorder,’” he said.
Katy added that the first time he went to her house, her mother asked her, “Are you sure he doesn’t have narcolepsy as well?”
He eventually decided to do a sleep study and was diagnosed with narcolepsy without cataplexy.
Narcolepsy is thought to be an autoimmune disease, according to the National Organization of Rare Disorders. The Rodens explained that the condition is caused by a lack of a chemical called hypocretin. The National Sleep Foundation states that hypocretin “acts on the alerting systems in the brain, keeping us awake and regulating sleep-wake cycles.”
Life with Narcolepsy
Katy and Robby have two different types of narcolepsy.
“I have cataplexy really badly, and I also have narcolepsy, so for me it was really hard to keep a full-time job,” she said.
Katy explained, “I take two different kinds of medication, which really helps.”
At night, she takes one medication to get to sleep. She has to take one dose at bedtime and another in the middle of the night. That can be a touchy situation because of Robby’s narcolepsy.
“Once he’s asleep, he really needs to stay asleep,” she said, “and all my alarms are going off in the middle of the night to take my second dose.”
Katy also takes a stimulant to stay awake during the day, but she sometimes takes other measures.
“I find that naps are really helpful, so I have a futon in my office,” she said.
“And I have a cot in my closet,” Robby added.
“And our agents kinda know that if my door is closed and locked,” Katy said, “I’m probably taking a nap so give me 10 minutes and I’ll be back.”
“I’ve tried pretty much all the same meds she’s been prescribed and my body didn’t react well to it,” Robby said. “So I just try — and I know a lot of people with narcolepsy hate it when people say, ‘Have you tried diet and exercise?’ because it’s like, ‘Yeah, that’s the first thing I tried was diet and exercise.’ But for me diet and exercise makes a huge, huge difference. It doesn’t solve the problem, it just makes it more tolerable.”
One effect of Robby’s narcolepsy is that he has a bad memory, he said, but he copes.
“I’ve learned how to take really good notes, have lots of Google Calendar reminders for things,” he said.
That both Katy and Robby have narcolepsy can complicate home life sometimes.
“People always ask, ‘How does that work?’” Katy said “You’d think we’d be more understanding of each other, but sometimes it makes it a bit more complicated because we’re both tired and frustrated.”
Robby said that when they moved into their new home, they invested in two separate beds.
When Katy has sleep disturbances, he said, “It’s horrible. She has so many episodes of kicking, screaming. … It scares the mess out of me. With the separate beds, it’s been amazing.”
Raising awareness
In 2012, the Narcolepsy Network gave the couple an award for Public Awareness for appearing on MTV’s “True Life - I Have Narcolepsy” show.
“That was all her,” Robby said, adding that he was reluctant to be filmed.
“I’d started to pursue real estate,” Katy said, “but I really wanted to do something to raise awareness for narcolepsy. That was kind of my life goal.”
Besides the MTV episode, the Rodens use 3Z Realty in their quest to educate the public.
“When we started the company, we decided to combine both of our passions,” Katy said. “With 3Z Realty we raise funds and awareness for narcolepsy. And each year … we do a narcolepsy awareness party. We also donate a portion of our income to all the sleep organizations.
“You’d be surprised,” she said. “People are actually really excited to work with us when they find that out. … One lady called us because she had seen us on MTV. Her daughter had narcolepsy and they wanted to sell their house.”
Saturday’s “Suddenly Sleepy Saturday” party will include activities for the whole family.
“We’ve had really good luck with painting parties in the past,” Robby said. “We usually have pretty good turnout. We have about 50 easels that we buy and then we just go buy a bunch of canvases and paint.”
This year, Robby said, there will be someone offering a painting class on site, and attendees will be charged per canvas. A portion of the proceeds will go to Narcolepsy Network and Wake Up Narcolepsy.
“This year we’re going to do a pajama party as well,” Katy said, “because we have a lot of friends and clients who have kids. Bring your kids out, wear your onesies or pajamas, and we’ll do a contest for best pajamas.”
Several area businesses have sponsored gift cards as prizes at the event.
Robby said that he and Katy hope they can help people through their efforts.
“Cancer, cardiovascular stuff — those are the real big killers in the world. Those diseases are probably the most funded and researched, and for good reason,” he said. “And so I think narcolepsy gets the back seat a lot. Narcolepsy — it technically doesn’t kill you. It can cause heart problems, weight problems, depression …”
“Car accidents,” Katy chimed in.
“It’s not … some dinky thing, but it’s not as big as the big dogs out there, either,” Robby said. “We want to raise awareness more than anything. Having to go 10 years or more without medication as a person with narcolepsy before getting diagnosed … hopefully with our efforts we can help shorten that by raising awareness and helping people know, ‘Maybe I should go get a sleep study.’"
