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Teen takes POTS awareness to Capitol Hill

(ROCKWALL, TX — August 30, 2017) Local Rockwall High School senior Regan Watson has struggled to maintain a sense of balance and normalcy ever since she discovered she suffers from a form of autonomic nervous system disorder called postural orthostatic tachycardia syndrome, or POTS. But she decided she’s not going to let her illness define her: she’s going to take action for others who can’t.

Symptoms of POTS include a heart rate increase of 30 beats per minute or more from simply standing up, irregular blood pressure, and chronic fatigue. It can be just as debilitating as congestive heart failure. Nicole Watson, Regan’s mother, explained that as her daughter’s condition initially worsened, she had to give up many of her favorite activities and miss dozens of days every school year.

“She was always hardworking, driven, and successful in everything she did,” Nicole said. “Suddenly, taking a shower was all she could do in a day.”

After a hospital stay earlier this year that prompted Nicole to research new medicine options for Regan, she discovered something that shocked her:  There was medicine traditionally used for heart failure that POTS patients had been using successfully in the United Kingdom for about 10 years. However, since American insurance companies did not yet classify this medicine as a treatment for POTS, one month’s supply would cost $750 out of pocket in America.

Fortunately, the Watsons found a solution. By ordering the medicine from Canada, they could purchase 100 days’ worth for $100 instead.  But this experienced solidified something they had already suspected from many years of misdiagnosis for Regan: that there is a lack of POTS awareness and research in the United States.

This summer, as Regan began to benefit from the effects of her new medicine, the Watsons were able to attend an annual conference for Dysautonomia International in Washington D.C.

Dysautonomia International is an organization dedicated to raising awareness about POTS and other similar conditions. On July 14-17, they held their 5th annual conference, which included “Lobby Day.” According to Lauren Stiles, President and Co-Founder of Dysautonomia International, conference attendees met with over 100 House and Senate offices to raise awareness and received a warm welcome from the Congressional offices and many offers to support their cause.

“We are really fighting to raise awareness on Capitol Hill, and to get funds directed towards research,” Stiles said. “It really helps these young patients feel empowered.”

The Watsons joined the fight for awareness by meeting with James Baker, Senior Advisor for Congressman John Ratcliffe, who represented him while he was in session. At first, Regan Watson was nervous to bring her story all the way up to Capitol Hill. But her mom assured her she was doing the right thing.

“I said, ‘That’s their job: to listen to people like you and me,’” Nicole said. “If we sit there and do nothing, nothing is going to change. Somebody has to be the one who is proactive.”

The Watsons said they explained to Baker that an estimated 1-3 million Americans live with POTS, making it more common than multiple sclerosis. However, according to Dysautonomia International, it receives less than $200,000 per year in National Institutes of Health (NIH) research funding, while other diseases receive hundreds of millions.

“It’s kind of like a few cents per person,” Regan said.

As a result of the lack of awareness and research, the average POTS patient experiences a four-year diagnostic delay. Regan’s diagnosis took five.

Regan described POTS as an “invisible illness.”

“They don’t believe you,” she said. “They think it’s just in your head.”

Stiles said Regan’s experience is typical for that of a POTS patient. POTS impacts 1 in every 100 teens, 85-90% of POTS patients are female.  Stiles believes this is the reason they are often dismissed or misdiagnosed.

“POTS is the perfect example of gender bias,” Stiles said.

The Watsons said that Baker seemed very receptive to their information and perspective on POTS. He promised that Congressman Ratcliffe will attend a dysautonomia briefing for Congress called “Misdiagnosed and Underfunded: The Plight of Women and Children with Postural Orthostatic Tachycardia Syndrome” requesting more research from the Center for Disease Control. The briefing will take place in October, which is Dysautonomia Awareness Month.

As for Regan, she is determined not to let her condition stand in the way of her dreams. She is excited to begin her senior year of high school, and she plans to attend college the following year. Someday, she dreams of becoming a veterinarian.

“At the conference, we had to describe POTS in six words,” Regan said. “My quote was, ‘I am more than this illness.’”

For more information on POTS, visit www.CurePOTS.org.

By Julie Anne White, Blue Ribbon News. Photo courtesy of Nicole Watson.

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