Run a big effort to fight little-known disease

 A little-known disease deserves a big response, according to organizers of a fundraising event on Sunday, June 12, in Kennett Square.

Taylor Kulp (left) and Erin Harten are organizing

Taylor Kulp (left) and Erin Harten are organizing the walk and run to raise awareness of POTS.

Participants will gather at 10 a.m. at Anson B. Nixon Park for a walk and run to raise awareness for Postural Orthostatic Tachycardia Syndrome (POTS).

POTS can drastically alter lives, many times turning a strong healthy individual into a bed-ridden medical mystery overnight, according the event’s organizers: Erin Harten, a POTS patient and senior at Unionville High School, and Taylor Kulp, also a POTS patient and graduate of West Chester East High School.

The pair is co-hosting the event with the help of family and friends. “POTS has completely altered my life,” Erin Harten said in a press release. “I went from being able to run around and play sports to struggling to walk around the house. Life with POTS is a constant roller coaster: some days I am able to make it through a school day, while other days I can’t even get out of bed.”

Taylor Kulp echoed similar sentiments: “Slowly, but surely, my life did a complete 180 due to POTS. I am supposed to be a sophomore in college, but have had to take time off from school because I have been mostly bedridden the last few years. POTS has created countless setbacks for me, but it has also shown me how many people, family, and friends, are there to support me every step of the way.”

Exercise is a key part of the treatment plan for POTS patients, which makes the walk and run event especially fitting, the release said. Funds raised will benefit Dysautonomia International, a 501(c)(3) that is dedicated to identifying the causes and cures for all forms of autonomic disorders and to enhance the quality-of-life of people currently living with these illnesses.

POTS is a disorder of the autonomic nervous system. It is characterized by an increase in heart rate of more than 30 beats per minute upon standing. Symptoms are widely varied, but can include palpitations, dizziness, nausea, fatigue, difficulty concentrating, fainting, and sweating. POTS patients experience a range of impacts on quality of life. Approximately 25 percent of POTS patients are so disabled they are unable to work, while others can live fairly normal lives. An estimated 1 million Americans suffer from POTS, primarily young women. The cause of POTS is still not understood and there is no known cure, the release said.

The cost to participate is $25 per person. To register, click here Anson B. Nixon Park is located at 201 Waterworks Drive in Kennett Square. For more information about POTS, click here .




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