06 Sep Wake Up Narcolepsy Board Member Nicole Jeray Competes in 2023 U.S. Senior Women’s Open Championship
Written by Cara Weaver
For most people, Narcolepsy and golf are two things that don’t seem to be connected, or even compatible. For retired professional golfer and person with Narcolepsy Type 1 (Narcolepsy with Cataplexy) Nicole Jeray, they go hand in hand.
Nicole Jeray earned full Ladies Professional Golf Association status nine times and gained partial status eight times. She is also a board member for Wake Up Narcolepsy, a 501(c)(3) nonprofit organization dedicated to driving Narcolepsy awareness, education and research towards improved treatments and a cure. Narcolepsy is a lifelong disorder of the central nervous system, characterized by the brain’s inability to control the sleep-wake cycles.
On August 24th – 27th, 2023, Jeray partook in the 2023 U.S. Senior Women’s Open Championship at Waverly Country Club in Portland, Oregon. The announcers of the event on Peacock TV mentioned her Narcolepsy while covering her playing, something that isn’t a frequent occurrence.
Nicole’s condition isn’t often covered by announcers. When asked about the coverage, she said that she was “happy that they had said [she] battled through it since early in [her] career and found better treatment,” but she also expressed a level of disappointment that this seemed to be the first instance of people really paying attention to the condition in association with her career. The focus is usually on her coaching and other information, but she wishes that more awareness would come from her story.
One announcer stated, “I think we all knew she had some struggles on tour, but the extent to which she had to deal with her condition while trying to compete at the highest level, I don’t think any of us really understood.”
Another commented, “It cannot have been easy to deal with a condition like that and play this high level of golf.”
“She always competed with a smile, in spite of the fact that she may have been dealing with challenges that other players did not have to…” recognized an announcer.
Due to its often misunderstood nature, Narcolepsy is one of those topics that people often don’t feel confident discussing. In fact, a lot of health professionals are still learning about the sleep disorder. In a survey of around 100 physicians in the Greater Boston Area in 2022, it was found that only 48% of the professionals were able to identify three out of five CHESS symptoms of Narcolepsy (Cataplexy, Hallucinations, Excessive Daytime Sleepiness, Sleep Paralysis, Sleep Disruption). Only 4% were able to identify all five.
“It’s odd,” Jeray said about her experiences with discussing Narcolepsy, “Everyone around me knows about my Narcolepsy, but they don’t talk about it. Even though I’m an open book!”
When recently asked what kept her playing all those years, she mentioned her journey with treatment for Narcolepsy. “I figured that better treatment meant better golf!”
The championship is a four day tournament, not including the practice rounds where they learn the course. For those unfamiliar with Narcolepsy, you may be thinking that she is likely to fall asleep randomly on the course. The misconceptions and stereotypes associated with the condition are part of why Jeray would like to see more about Narcolepsy in press coverage.
Jeray expressed that she is lucky that she has found treatment that works so well for her and that Narcolepsy doesn’t even necessarily affect how she plays on the course today. More than the condition, the biggest struggle with the recent event was that she has retired from playing professionally and isn’t in the same shape she used to be in. Staying in shape also helped her Narcolepsy symptoms.
“I don’t even know how I used to do it when my treatment wasn’t so good. It’s a miracle to me,” the retired player said, looking back on the beginning of her career. Jeray is now on a treatment consisting of Xywav, Venlafaxine and Sunosi. To learn more about types of medication used to treat Narcolepsy, click here.
As a board member for Wake Up Narcolepsy, Nicole Jeray stays very involved in the Narcolepsy community. When asked by a media representative at the championship what she wanted to be mentioned if she was on tv coverage the next day, she eagerly spoke of her passion for the work with WUN and raising awareness for the condition.
As we closed out the interview, Nicole shared her advice for people living with Narcolepsy who feel like their passion or dreams aren’t achievable.
“Keep trying. You just gotta find the right treatment. Almost anything is possible, there is a way. I chased my career for a long time when many people thought I should give up and I’m glad I didn’t,” she confided, “I’m glad I never gave up because it was my passion. I don’t know how I did it back then I just did it. It’s not easy, it’s not. I’m lucky that I was able to somehow keep going.”
Nicole Jeray will be attending Wake Up Narcolepsy’s Conference and Patient Summit on September 9th and will be hosting a panel of people with Narcolepsy as well as leading a breakout session. You can register to attend the conference virtually or in-person here.