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Kristin Murphy, Deseret News
Betsy Thomas, who has advanced sleep phase syndrome, poses for a photo at her home in West Jordan on Friday, Aug. 9, 2019.

SALT LAKE CITY — The early bird may get the worm, but is it worth it?

Answers to that question will likely vary depending on whom you ask, but for those with advanced sleep phase syndrome, sleeping in isn't an option.

"I've had this all my life. Of course I went to a lot of doctors who thought I was depressed. I'm not depressed, I'm sleepy," said Betsy Thomas.

Ever since the 91-year-old can remember, nighttime has been between the hours of 7 p.m. and 4 a.m.

Kristin Murphy, Deseret News
Elizabeth Thomas helps her grandmother-in-law, Betsy Thomas, walk outside of Betsy's home in West Jordan on Friday, Aug. 9, 2019. Betsy Thomas has advanced advanced sleep phase syndrome.

Thomas helped put the syndrome on the map after visiting sleep hygiene Dr. Chris Jones in 1992. A recent University of Utah co-authored study notes that the condition is more prevalent than previously thought.

Jones said when Thomas first came to see him at the University of Utah sleep center, she had been diagnosed with narcolepsy, a sleep disorder that causes extreme drowsiness during the daytime.

When she told him that her drowsiness only began in the evening and that during the early morning hours she was wide awake, he thought, "Maybe you're just a real morning person."

Thomas told Jones that not only is she an extreme morning person, but so is her whole family.

"My grandfather had it, my mother had it, my aunt Clover had it, two of my granddaughters have it. I have a nephew that has it," she said, noting that when she told Jones, "his eyes got bigger and bigger."

She agreed to participate in a study. Jones said she also talked many of her relatives into giving blood samples and taking sleep questionnaires for the study.

After consulting with his colleague at the time, Louis Ptack, Jones said the pair began a seven-year study that resulted in the first published description of a familial advanced sleep phase syndrome.

In 2001, the research team was able to successfully map and clone the first reported "human circadian clock gene mutation."

At the time, advanced sleep phase syndrome was thought to be rare. But the study found that 1 in 300 sleep clinic patients presents with this syndrome.

The study was co-authored by Jones,Ptack, Liza H. Ashbrook, Terry Young, Laurel A. Finn and Ying-Hui Fu and published by the Sleep Research Society.

Kristin Murphy, Deseret News
Elizabeth Thomas flips through a book about her grandmother-in-law, Betsy Thomas, as Betsy sits on the couch at her home in West Jordan on Friday, Aug. 9, 2019. Betsy Thomas has advanced sleep phase syndrome.

Jones said the study began with a series of questionnaires and surveys of patients who had visited the university's sleep clinic.

"It's a very simple two item questionnaire to sort out whether you're a profound morning person, a profound night person or mostly middle of the road average sleep time."

Following six questions, patients selected to continue in the study were interviewed by Jones or a trained research coordinator.

According to the study, interview questions inquired about "habitual workday and free day sleep schedules, alarm use, daytime napping, daily rhythms of mood and alertness, effects of seasonal and time zone changes on sleep."

The interview also included questions that could exclude for influences on sleep such as caffeine, alcohol, medications, age-related changes in sleep schedule as well as other conditions that influence sleep such as depression, insomnia and obstructive sleep apnea.

Criteria for patients categorized with advanced sleep phase included the ability to fall asleep before 8.30 p.m. and to wake before 5:30 a.m. without external obligations such as work or school schedules, according to the study.

Of the 2,422 patients that participated in the study from 1994 to 2003, eight met all the criteria for advanced sleep phase and five family members of the patients also met the criteria.

The study noted many people likely did not perceive the condition as a problem because of early school and work schedules.

Before the study, Thomas said it was always difficult to explain to her friends why she was fast asleep at a time when many people were still socializing.

Kristin Murphy, Deseret News
Betsy Thomas, who has advanced sleep phase syndrome, poses for a photo at her home in West Jordan on Friday, Aug. 9, 2019.

"I must have been a very exciting date because I fell asleep on most of my dates," she recalled.

"I'm guessing (my) marriage worked whether I was sleepy or not," she said, while looking at her husband, Walter Thomas, who was sitting nearby.

Despite the fact that he is "a night owl," the couple has been married for over 71 years.

The secret to such a lengthy marriage, she joked, is "you have to start out marrying real young."

Because a number of her family members were also morning larks as a result of the gene, she said her sleep schedule never bothered her too much — although she noted, "I missed out on a lot of things."

She recounted promptly falling asleep during a film her mother-in-law had arranged for the whole family to go to together. However, one thing she said she made an effort not to miss out on were evening dances with her husband.

"Walter was quite the dancer," she explained.

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Thomas said after the first studies got attention from news organizations and "I became famous," people finally stopped telling her, "If you didn't go to bed so early, you wouldn't wake up so early."

Ptacek noted that aside from furthering genetic research, one of the important implications of the study is that it can "raise people's awareness that … our tendencies to sleep are partly genetic and biological and we need to respect differences from people across the spectrum."