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The POTsies

10/19/2017 10:27AM ● Published by J. Chambless

Erin Harten of Kennett Square, left, and Taylor Kulp of West Chester have organized The Race to Beat POTS, an annual funraising event for Dysautonomia International.

By Richard L. Gaw
Staff Writer

Our fate, that general blueprint of destiny, is often fickle and not always tied to the proper order of things.

It was fate, mixed with an incurable disease that had afflicted them both, that brought 19-year-old Erin Harten from Kennett Square and 21-year-old Taylor Kulp from West Chester together in 2015.

Harten and Kulp are two of nearly 3 million Americans who live with Postural Orthostatic Tachycardia Syndrome -- commonly referred to as POTS -- a condition in which a change from lying to standing causes an abnormally large increase in heart rate, and includes symptoms such as lightheadedness, blurry vision, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and fatigue. The cause of POTS, while still largely unknown, is thought to be triggered by the patient having experienced a recent virus, and one study found that one in eight POTS patients reported a history of orthostatic intolerance in their family.

There is currently no cure.

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Within a three-year period, Harten went from an active life that included playing softball and horseback riding to sleeping as much as 20 hours a day. The symptoms began when she was at Patton Middle School and continued throughout her four years at Unionville High School. At her first practice as a freshman member of the marching band, she collapsed, and was unable to hear or speak. The years at Unionville were pockmarked with sick days and visits to doctors, and it seemed that with every doctor, there was a different diagnosis.

“You go to doctors and you expect them to understand you, answer your questions, and provide a treatment, but we didn't receive anything but inaccurate diagnoses,” said Harten's mother, Sheri. “It became a constant process of searching and going online and asking questions.”

Finally, after being treated for a virus in her sophomore year, Harten received the diagnosis that she had been waiting for.

“You have Postural Orthostatic Tachycardia Syndrome, or POTS,” the doctor told her.

Eight years ago, Kulp went from being a year-round volleyball athlete to a bed-bound teenager with no answers for what was causing her debilitating pain and fatigue. A student at West Chester East High School, Kulp spent her sophomore and junior years at home. Just prior to the start of her senior year, she was diagnosed with POTS in 2014 at the Mayo Clinic in Rochester, Minn., and spent three weeks at the Mayo Clinic's Pain Management Program.

“I thought that it was my fault, that I was doing something wrong,” Kulp said. “I was trying everything -- increasing my salt intake and my fluids and working on perfecting my medications -- and nothing would work. I didn't know more that I could be doing. My parents were just as frustrated.”

Kulp said that the worst of it was that she could not pronounce the disease she had.

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Dysautonomia International is a worldwide, non-profit organization that helps identify the causes and cures for all forms of dysautonomia, in order to enhance the quality of life for those suffering from the illnesses associated with the disease, which include POTS.

Erin Harten did not know Taylor Kulp when they both attended the 2015 Dysautonomia International Conference in Washington, D.C., but they both came with the same intention: To affirm their belief that they were not the only people living with POTS. They weren't. They met patients, caregivers, researchers, physicians, industry representatives, non-profit leaders and government policy makers. On the last night of the conference, both sat in on a workshop about organizing fundraising events.

“Every member of the audience was asked to divide up into a group,” Kulp said. “Erin was part of the group I was in, and when we both realized that were both from the same area, we began to think, 'Let's start a race of our own back in Chester County.'”

Team Hearts with Harten and Team T. Kulp were born.

On June 12, 2016, the first Race to Beat POTS drew 200 people to Anson B. Nixon Park in Kennett Square. Organized by Harten, Kulp and dozens of volunteers, the 5K run and walk raised $16,000 for Dysautonomia International.

“The whole event just blew up on social media,” Harten said. “Seeing the reaction of so many people confirmed to me that there is a community of local people who are going through the same experience, and it was incredible to meet so many others who are going through the same thing.”

After the race, Harten and Kulp turned to their mothers and told them that they were holding the second Race to Beat POTS in 2017.

In the weeks leading up to this year's race, Harten and Kulp raised the bar just a bit with a fundraising goal at $25,000. On June 18, the second Race to Beat POTS raised $35,000 for Dysautonomia International.

For their work, Harten and Kulp both received the Volunteer of the Year award at this year's Dysautonomia International conference in Washington, D.C. There, they met representatives from the offices of Sen. Bob Casey and Sen. Ryan Costello, and talked to them about how the government can help spearhead efforts to raise both money and awareness to those living with POTS.

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There are a lot of worst days in Kulp's life. Twice a week, she attends physical therapy sessions, and twice a year, she and her mother fly to the Mayo Clinic in Phoenix for week-long treatments. She spends most of her days in bed, and when she does leave the house, her mother pushes her in a wheelchair. She relies on a feeding tube for most of her nutrition.

“And yet, I continue to draw inspiration from seeing my fellow POTsies, and hearing how they are able to maneuver their way through life and overcome those limitations,” she said. “I felt very alone at first, not understanding what POTS meant, and now I don't feel alone at all.”

Kulp wants to achieve her dream of attending nursing school, in order to dedicate her life to extending empathy to patients who are experiencing pain.

Harten is now a sophomore at Gettysburg College, where she is studying biology in preparation for becoming a doctor. She will specialize in treating patients who live with the disease she has come to accept.

“We have to turn this into a positive,” Harten said. “There are a lot of people who are in the same position who are now working and living their lives. Volunteering on behalf of others has given me a hope and a passion in life.”

To learn more about POTS, Dysautonomia, other forms of Dysautonomia, or Dysautonomia International, visit www.dysautonomiainternational.org.

To contact Staff Writer Richard L. Gaw, email rgaw@chestercounty.com.

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