Postural orthostatic tachycardia syndrome (POTS) is more common in the US than MS and yet it’s not a well-known disorder. Hoping this story I wrote for “The Philadelphia Inquirer” changes that.
Here’s the top of the story:
It’s easy to make Taylor Kulp or Erin Harten smile. Just ask how their lives have changed since they met.
Three years ago, both young women said they felt alone as they struggled with postural orthostatic tachycardia syndrome (POTS), a disorder in which such automatic functions as heart rate, blood pressure and digestion aren’t as automatic as they should be. For instance, a POTS patient might lie down for 10 minutes, get up, and find her heart racing alarmingly because the autonomic nervous system is malfunctioning.
The disorder had forced both to give up their favorite sports, frequently miss school, and spend years going from doctor to doctor to doctor before being correctly diagnosed.
Back in 2015, they were with their mothers, in Washington, learning how to raise funds for disorders such as theirs at a conference sponsored by the nonprofit Dysautonomia International.
One of the mothers excitedly said she knew the perfect place to host a fund-raising race. The other said she did, too.
Both were thinking of the same place, Anson B. Nixon Park in Kennett Square. Then they discovered their families lived about 10 minutes from each other in Chester County.
“It was like, ‘How have I not found you prior to this?’” Kulp, now 22, from West Chester, began. “We had so much in common and we clicked right away. It was meant to be. I don’t really believe in fate that much, but … ”
“It’s kind of hard not to,” Harten, 20, from Kennett Square, said to finish her thought.
In only two years, the Race to Beat POTS 5K fund-raiser collected more than $50,000 for POTS research. Attendance doubled from 100 people in the first year to 200 the second. The third annual 5K, set for June 3, is expected to have at least 300 participants and to raise $25,000.
The money is phenomenal, the young women said, but it’s impossible to put a price on the event’s social and emotional benefits.
“We keep finding more and more people in the community and the race keeps growing,” Harten said.