How a Diagnosis and a Growing Community Changed the Life of this Sleep Micro Influencer, Resulting in Excellent Educational Content for All People Affected by Sleep ApneaIn our monthly sleep story, meet the founder of the Sleep Apnea Stories (SAS) podcast: Emma Cooksey. Born and raised in Scotland, but transplanted to Florida in 2007, Cooksey’s unique accent is hard to place upon first meeting, but it’s a great, soothing voice for a podcast. Beyond the advocacy done through her SAS series, Cooksey serves on the board of Project Sleep, a 501(c)(3) non-profit, raising awareness of sleep disorders. Cooksey personally brings a passion for combating obstructive sleep apnea (OSA), as she’s lived with the condition, both treated and untreated for decades.
A Diagnosis is Just the BeginningFor many women who struggle with daytime drowsiness, mental fog, and even depression in their 20s, sleep apnea is a root cause. Unfortunately, women do not present in the same ways as men, and for many women, they simply aren’t diagnosed with sleep apnea, leading to years of struggles. That was the case for Cooksey. She never knew her daytime drowsiness was associated with her sleep. No one ever pushed her to consider sleep health as the root cause of these issues. Not her primary care physicians, not her OB-GYN during her pregnancy, nor the people she spoke to about her depression. It wasn’t until she was in her 30s, when she fell asleep while behind the wheel out of exhaustion from poor sleep that she finally sought the solution and treatment for her sleep challenges. In the opening episode of the Sleep Apnea Stories podcast, Cooksey shares the heavy details of her own story, including that moment of recognition, the insights she wishes others had told her about her CPAP, and how her life has improved more than a decade after diagnosis. The day Cooksey found out about her OSA was bittersweet:
“Yes, having an answer is a relief. But the reality that you are required to wear a CPAP machine every night for the rest of your life? That’s still a shock,” Cooksey said.And while it feels that way at the time, that moment of realization isn’t a unique one. It is shared by everyone who’s struggled with OSA for years without knowing what was wrong, including Karen Moore, a recent SAS podcast guest. Listen (and read along) as Moore describes her moment of clarity with a similar feeling: For Cooksey, the moments after her diagnosis spawned feelings of loneliness, as she assumed she was alone in this journey. Through her work on the SAS podcast, she has shown us all that she’s not alone. People with sleep apnea are not alone. And we’re stronger together.
Uniting those Affected by Sleep ApneaThe cooped up nature of the pandemic led Cooksey to launch the Sleep Apnea Stories podcast. Over the years, she had contemplated creating a blog to describe her experience, as she wasn’t aware that other moms also suffered from sleep apnea. Of the few sleep apnea ads she’d ever seen, most targeted older, heavier-set males. Awareness of OSA just wasn’t available for women like her, and that extends beyond knowledge of the disorder(s) to the treatment plans. However, the real “match strike” moment came when Cooksey first learned of alternative treatment solutions, years after her diagnosis and time with CPAP. She was reading an article on new PAP solutions, and in the very last sentence, there was a comment about oral appliances, implantables, and surgical options. She felt forgotten. Why hadn’t anyone ever mentioned alternatives to CPAP? The anger and frustration she was feeling rekindled the idea to start the blog, but Cooksey wasn’t sure that was the right platform. So, her pandemic project became a podcast. She started by looking for people that were providing treatment beyond CPAP therapy. Once the ball was rolling, it was crystal clear how big the sleep apnea community really was and the impact her podcast could make.
6 Sleep Apnea Stories Podcast Episodes to Listen To TodayEarly episodes of the series focused on non CPAP stories and included interesting angles into implantable devices, innovative procedures, and pediatric sleep challenges and solutions. While every episode of the series provides a unique look into the world of sleep apnea, Cooksey highlighted a few favorite episodes:
- Emma Cooksey – Delayed Sleep Apnea Diagnosis: “I really feel like this first episode helps people get to know me and my why,” shared Cooksey regarding the most listened to episode in the series. In the episode, she dives into the details of her experience behind the wheel, her adjustment to life with sleep apnea, and ultimately, the silver linings to sleep apnea, including the early diagnosis of her daughter thanks to attention to the warning signs.
- Dr. Robert W. Turner II – Raising OSA Awareness Among Black Men: The challenges in diagnosis and treatment of OSA vary for different demographic groups. In this episode, Dr. Robert W. Turner II shares insights around the specific needs of black men. Dr. Turner’s research, specifically focus groups for developing messaging to reach black men, led Cooksey to reach out to Dr. Turner regarding this important discussion.
- Dr. Madiha Ellaffi – The App for Parents and Kids with Sleep Apnea: This French pulmonologist created an app (and book) to help children navigate their sleep issues by following the story of a little woodchuck named Martin. Adorably effective, this solution really helps pediatric patients understand their sleep challenge and how it might make them grumpy or sleepy.
- Karen Wolk – Inspire Implant for Sleep Apnea Treatment: “Karen’s life was so negatively impacted by OSA. Before she got on the right treatment, she was experiencing serious cognitive problems that stemmed from her lack of sleep. It took forever for her to get a diagnosis, and then because of her claustrophobia, CPAP was uncomfortable and downright unusable. Inspire really gave her her life back,” said Cooksey.
- James Nestor – Breathing and Sleep Apnea: Cooksey and Dr. Nestor discuss his best-selling book “Breath: The New Science of a Lost Art”. In the episode, Nestor explained the experiment described in the book where he blocked up his nose and tracked the physiological results. “James Nestor found that blocking his nose and only breathing through his mouth for 10 days resulted in snoring and apnea events where he had none before,” noted Cooksey.
- Bob Stanton – Truck Drivers with Sleep Apnea: In this episode, Cooksey talks about the significant impact that OSA has on the trucking industry. Currently, 1 in 3 truck drivers have an OSA diagnosis. That is a large chunk of the population for a job that requires constant alertness and awakeness for obvious safety reasons. Stanton also discusses how the recent 2021 CPAP recall has led to challenges for many drivers, pushing Stanton and others to Washington to lobby for alternative therapies beyond CPAP for truck drivers.
What’s On Deck?The series is really intended for a wide group of listeners, but largely attracts people with OSA. That’s who content is catered to, because that’s the content that didn’t exist for Cooksey during her own journey.
“I want to continue to find stories that provide answers to the questions related to OSA that your doctor hasn’t mentioned. Not everyone experiences sleep apnea the same way, and I want people to know that they’re not alone in this process. This community is here to work through the challenges together,” said Cooksey.Well put Emma, and exactly why we will continue to listen along every Wednesday as new episodes come out. Cooksey shared a few details on episodes coming out soon:
- Olivia Arrezolo: Australia’s #1 sleep expert. As a sleep coach, Arrezolo talks about both sleep treatment and sleep hygiene, and the role each plays in your overall sleep health.
- Dr. Jill Ombrello: As the “quarterback of care” for patients in Texas, Dr. Ombrello provides oral appliance therapy and serves as the coordinator between PCPs and DMEs to make sure no patients fall through the cracks.
- Our own Sandy Smith is joining Cooksey for an episode talking about her own familial struggles with sleep apnea. Smith discusses her mother passing away too early, and in a situation much like Cooksey’s, she shares how her ability to recognize the warning signs led to her son’s early diagnosis. The morale of the story: awareness and education save lives. And until we’re educating the masses, we’re leaving people vulnerable.