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.
Said Kulp, “That’s one of my favorite things, a lot of people who have never met someone with the same condition come to the event and find someone who’s had the same experiences.”
An estimated three million Americans — the majority of them female — are affected by POTS, a chronic syndrome that can cause significant disability, including profound dizziness, fatigue, pain and an elevated heart rate, said Jeffrey R. Boris, director of the POTS Program at Children’s Hospital of Philadelphia. All of the symptoms are worsened when the sufferer is in an upright position.
“Patients often cannot attend school or work, have significant exercise intolerance, and sometimes can’t even do the activities of daily living,” Boris said. “We don’t know what causes it, which is why the fund-raising done by this and other important events is so helpful to push the research in the field forward, so that we can be more effective in helping these patients.”
Lauren Stiles, who co-founded Dysautonomia International almost six years ago, said growing awareness of the disorder has helped her organization raise more than $1 million for POTS research. The nonprofit now serves more than 50,000 patients and caregivers in online and in-person support groups.
“Every time there’s a news story on POTS, we get dozens of emails from people saying, ‘My neighbor/wife/daughter/mother/niece has that too!’” she said.
Stiles is thrilled that Kulp and Harten connected through her organization’s annual meeting. (Its sixth annual conference is scheduled for Nashville in late June.)
“When you meet someone who shares your common goals, it empowers you. Bringing people together makes us all stronger,” she said. “They are amazing. They give me a lot of hope that this younger generation is going to really change the way we think about POTS and other forms of dysautonomia and lead us toward a cure.”
Harten was 12 when she first showed symptoms of POTS, but it would take three years for her to get the correct diagnosis. She would become dizzy for no reason, have unexplainable pain, and feel so tired that she would sleep for 20 hours a day.
“I was very, very weak. I was able to walk from my bed to the couch and from the couch to my bed and that’s it,” she said.
Some clinicians suggested that the teenager was having growing pains.
“Doctors would tell me that, but my child was clearly suffering. … It never got better. It never went away,” Sheri Harten said. “It was a scary, sad time.”
Kulp was 13 when she went from being a healthy volleyball player to being stuck in her bed. She was dizzy and felt as if she had brain fog. Her gastrointestinal functions were out of whack and she became so malnourished that she had to have a feeding tube installed. (She currently has one, too.)
It took four years, more than a dozen specialists, and a trip to the Mayo Clinic to be diagnosed.
“When she got the diagnosis, I was texting everyone, like, ‘This is great! She’s got this thing called POTS. They’re going to cure her now,’ not knowing there is no cure for this,” mother Cindy Kulp recalled.
Both women take more than 20 drugs and supplements multiple times a day. Sometimes they have needed wheelchairs. Both have finished high school and Harten just finished her sophomore year at Gettysburg College. They lead a local POTS support group and devote the time they used to spend playing sports to organizing and advocacy.
They’ve become so familiar with the symptoms of POTS that Harten suggested a woman who also played with the Gettysburg College marching band be tested for the disorder. She did have POTS.
Kulp tells newly diagnosed patients “to hold on, that they’re not alone. I thought I was, then I met Erin and another friend, Emily, and now I have a great support group. You may not get better, health-wise, but you can manage when you can find that clique. You’ll find your way. You’ll find your purpose.”