By Karen Billing
Rancho Santa Fe resident William Headapohl has transformed from a sleep apnea sufferer to an “Apnea avenger.” Headapohl is a board member of the American Sleep Apnea Association and works as a sleep coach for ResMed’s “Wake Up to Sleep” initiative, drawing on his experiences and advice detailed in his book “Sleep or Die: Overcome Apnea Before it Overcomes You.”
“My whole purpose now is to turn people into avengers and help them avenge evil sleep apnea,” Headapohl said. “The definition of avenge is to stomp out evil with asymmetrical fury. Sleep apnea must be stomped out with extreme prejudice because it’s a hidden killer and spawns so many other afflictions.”
Headapohl said up to 90 percent of sleep apnea cases are undiagnosed and over the last 15 years that number has not changed, although it’s as common in this country as Type 2 diabetes.
Headapohl said that one in five people has sleep apnea and it is manageable through therapy, but as successful treatments are so individualized there is a difficult barrier to getting people into the right treatment. Not to mention, there is a high level of denial in sleep apnea sufferers.
“People will feel like they have been hit by a Mack truck every morning and still don’t believe that they have it. It’s very difficult to motivate people to take action,” Headapohl said.
Sleep apnea is more than just snoring.
Sleep apnea stops breathing, making your heart beat faster, raising your blood pressure and increasing the risk of heart attack. Sleep apnea also causes insufficient sleep that can affect cognitive function and make people sick with depression and gastro esophageal reflux disease (GERD), Headapohl said. Headapohl added that sleep apnea can affect insulin production, which leads to the development of diabetes, and studies show cancers progress more quickly in people who suffer from sleep apnea.
It is more common in men than women and risk factors include being overweight and over the age of 40, but sleep apnea can strike at any age, even in childhood.
Learning other people’s stories has become critical to the success of treating sleep apnea, which is the reason why Headapohl has become involved in the public awareness effort. He wrote the book to give people practical advice, not coming from a doctor but someone who has been through it.
With the Wake Up To Sleep campaign, an online patient support community, he coaches patients, speaks at conventions and even participated in a twitter chat on March 20.
“I actually think sleep apnea is somewhat hindered by its name because it doesn’t get across the gravity of the situation,” Headapohl said.
He compares it to someone standing over a sleeping person and putting a pillow over their face every minute until they are gasping for air.
“It’s like suffocating over a long period of time,” Headapohl said, wondering if calling it “the smothering disease” would get the point across better.
Headapohl’s business experience has also helped him spread the word about sleep apnea.
Headapohl grew up in Montana and came to California to attend Stanford University.
In his career that includes being on the ground floor of several computer and Internet businesses, he compares himself to Forrest Gump; being in the right place at the right time and having no clue as to what was going on.
He worked for Apple, CNET and was a co-founder of the Internet ecommerce business BuyDirect.com. He moved to San Diego to become the chief information officer for Gateway.
He has since left Gateway and now works as a consultant both in sleep devices and IT-related matters.
Headapohl was awakened to sleep apnea in 1990, when he and his father were touring the world on a one-way ticket. He remembers being in a New Zealand hotel room watching his father sleep and not being able to believe what he was seeing — his father would stop breathing and gasp for air.
“At the time I didn’t realize what was happening,” said Headapohl. “When my father was diagnosed with sleep apnea, my eyes were opened and I realized this was much more than just a nightly annoyance.”
His father had always had health issues such as heart disease, GERD (Gastroesophageal reflux disease) and had developed diabetes — all ailments Headapohl believes can be traced back to untreated sleep apnea.
A CPAP (Continuous Positive Airway Pressure) machine was able to make his father feel much better and live an extended life.
His father had developed sleep apnea late in life but Headapohl took some convincing to believe that he had sleep apnea too and to do something about it.
“I was in denial, like a typical person with apnea,” Headapohl said.
More than just loud snoring, Headapohl suffered from extreme exhaustion — “When my children were born I could barely function for about a month,” he said — and had severe cognitive problems that affected his ability to keep track of things at work. He even dangerously fell asleep while driving.
He opted to try for a surgical solution after hearing that surgery had a 70 percent cure rate.
“I fell into the 30 percent side,” Headapohl said of the unsuccessful surgery on his tongue, throat and nose.
Not liking the option of going in for a painful jaw surgery, he sought the advice of Peter Farrell, the co-founder of the San Diego-based medical equipment company ResMed, who convinced him to use the CPAP.
“When I first started using it, I was embarrassed. I would hide it when people were coming over to the house,” Headapohl said.
As soon as he realized the treatment worked and he was empowering himself not be become a victim, he wasn’t as concerned with hiding it.
“Instead of hiding it, I’m putting it out there because it turns out there are a huge number of people that have it,” Headapohl said.
His book, “Sleep or Die” was released in July 2012. He wrestled with the tone and title of the book and in the end aimed to take the most serious approach that really hit home the seriousness of sleep apnea. He calls it his “stick book” because he sees himself as hitting people over the head with the information they need to know.
In the book he details the different ways to treat sleep apnea, from putting on a CPAP every night to the “simplest but least easy to do” solution of diet and exercise — the heavier a person is, the worse sleep apnea tends to be and sometimes simply losing weight can relieve sleep apnea.
With Wake Up To Sleep coaching, he speaks to about five to six people a week.
He’s found people will get the equipment and have a lot of questions about the mask, about how it fits, how often to clean it. He shares insider tips of “stuff you can only learn the hard way,” like always having two masks when you travel in case you lose one.
“The plan is to grow the program so more and more people are involved,” said Headapohl, who sees Wake Up to Sleep as being an invaluable resource for people whatever phase that they’re in, whether they want to hear more about recent research studies or they just want to know how to get their masks to work.
This year Headapohl will participate in Sleep 2013, the same conference where he launched his book last year and will be participating in a webinar on April 10.
He is also working on his second book on sleep apnea. After the “stick book” this book will be “the carrot,” talking about what’s so great about sleep, taking a more encouraging tone than “Sleep or Die.” He’s interested to see which approach resonates more with people.
He’s hoping both.
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