Updated: Apr 15, 2020
by Kristina Domitrovich // photos by Lindsay Pace Daffron
Amanda Swanton was a normal American teen. She was 16, went to high school in Wheaton, Illinois, she had a great group of friends, she enjoyed spending time with her family, she loved show choir – life was good. Until everything went black.
The first time it happened, she felt sick. Her stomach hurt, she felt nauseated, overheated, and that was it – that was the last thing she remembered. She woke up thinking, ‘Whoa, that’s really weird, never passed out before. I can check that off the bucket list now.’
The school nurse brushed it off, probably dehydration.
Swanton went about with her life, until a few days later when it happened again. This time, the concern grew. ‘Twice in a few days? Something must be wrong.’ Her parents took her to the ER. The doctors ran tests, took an X-Ray, checked her out for appendicitis, but everything came back negative. They recommended she go see a cardiologist just to be sure. Negative. Neurologist. Negative. Asthma specialist. Negative. Gynecologist. Negative. Allergy specialist. Negative.
All the while, Swanton passed out 25 more times.
Postural Orthostatic Tachycardia Syndrome, POTS for short, is a chronic illness affecting the heart and its ability to regulate blood flow. Essentially, the heart has trouble keeping up with the body’s movements. When Swanton would go from a resting state like sitting, and begin doing something as simple as standing up, she would experience symptoms.
“(My heart’s) natural instinct was to send all the blood in my body to my legs,” she said. “That would cause me to pass out, and the blood pooling, and the dizziness, and the headaches, and the nausea and the tiredness.”
Because it is a chronic illness, it’s hard to determine all the symptoms and how greatly people with POTS are or are not affected. Swanton likes to describe POTS as a spectrum: Some people can live a full life with it, some people are wheelchair bound and hooked up to IVs, some will even die from it. It all depends upon each patient and where they land on the spectrum.
A85 Cure on the Move
Swanton was finally diagnosed with POTS in January of 2016. Like so many others, she had never heard of POTS before. The night she was diagnosed, she and her mother began researching her condition.
“It was pretty scary,” she said. “When I first heard it, I thought, ‘Oh, I bet you it’s just like a little thing,’ but then when I looked into it I was like, ‘Wow, this is a whole lifestyle change.’”
Through researching her condition those first few months after her diagnosis, she found that 85% of patients with POTS are misdiagnosed before they are finally told they have POTS. Swanton also found that of the 3 million people with POTS around the world, a quarter of those are debilitated by their condition. That’s where she drew the line.
“It’s this popular in people, and this debilitating – how come it’s unknown?” Swanton said. “So finally I said, ‘Okay, I know what I’m going to do. I’m going to start a nonprofit organization, and we’re going to raise awareness for advocacy and research dollars, and I want to cure it.’”
Determined, Swanton founded A85 Cure in June of 2016. She was 17 years old. The name was inspired by the statistics, by the 85% of misdiagnoses before finding answers. The logo, designed by her aunt, also found its beginnings from the POTS community. Swanton mentioned a saying in the medical community: Every child with a cardiovascular condition is a heart hero. Going along with that theme, the font and logo are meant to resemble the Wonder Woman logo.
Eventually, Swanton found herself in Starkville, attending Mississippi State University. When she moved, so did A85 Cure.
“It really is my baby, it’s something that I’m very passionate about,” she said.
When she first arrived in Starkville, she immediately got involved with the Greater Starkville Development Partnership, and hosted a ribbon cutting for A85 Cure, to raise awareness in the area. Through that ceremony, Swanton was surprised at the number of people who contacted her about POTS.
“I discovered that POTS is really a huge epidemic in Mississippi,” Swanton said. “Mississippi is one of the highest (ranked) states that has POTS.”
While researchers are still unsure why POTS is rampant in Mississippi and the South as a whole, the detail took Swanton by surprise. Back home, right outside of Chicago, most people she told about her condition had never heard of it before. Down here, it’s a different story.
“It’s really great to have that support where they understand what it is, or they’re like, ‘Oh my friend has that, my mom has that,’ or, ‘Oh, I knew somebody in high school who has that,’” Swanton said. “I get that a lot down here, which is great because it gives you that extra bit of support and love and comfort.”
With this new knowledge, she made connections with the Blaire E. Batson Hospital for Children in Jackson, Mississippi. Swanton and A85 Cure work closely with Dr. William Moskowitz, a POTS specialist at Batson. Swanton said a POTS clinic for Batson is in the works, and she’s excited to have A85 Cure help however it can.
“When you’re in the South, it (can) take two hours to get somewhere, so it’s great that Batson exists, and if we could get that resource out here for all the patients suffering, that could be a really big help,” she said.
For now, Swanton focuses on hosting fundraising events for A85 Cure. From making heart hero capes for children last February during American Heart Month, working with brands like Kendra Scott and hosting golf outings, A85 Cure has accomplished quite a lot in its three years; but Swanton has bigger plans.
“My goal is to get to a national charity, and my goal is to eventually have enough advocacy research dollars out there to fully cure POTS,” she said. “I know it sounds kind of crazy or impossible, but it’s something that I’m passionate about, something that I would love to do and see happen.”
Finding Her Rhythm
Swanton’s doctor told her most people stop moving with their diagnosis, the opposite of what POTS patients should do. Swanton was told to get in the best shape of her life in order to train her heart.
“That’s the way to get the repetition going, get your heart rate going, and really kind of condition it to be able to handle the changes and flow of blood pressure,” she said.
At first, she struggled to find a balance of what works for her and her POTS. She said it took about a year to learn her triggers. Now, Swanton tries to workout every day, or at least run two miles every other day. In addition, she found her POTS symptoms are closely linked to her diet, so she restricts her sugar intake to 25 grams a day.
Swanton is currently a sophomore at Mississippi State University studying public relations. Being away from her family and doctors presented its own challenges, but Swanton, the super hero of POTS according to her aunt, makes it work.
“Being in a college town where there’s football, there’s parties, there’s the Cotton District – it gets kind of crazy sometimes. But I know my triggers,” she said.
She considers herself lucky, and says it’s a miracle just that she’s able to attend college, let alone run A85 Cure, too. Every day, she still checks in with her body and her heart to get a read for how the day will go. She said sometimes her heart still feels slightly weird, so she will take it easy for a little while until she’s feeling better. Living with POTS still affects her day-to-day.
“It really just depends. I’m incredibly blessed to live the life I do and to do the stuff I do with my foundation and with my every-day life, because I know there’s a lot of people who unfortunately can’t and are really struggling,” she said. “I love what I do every day … I have to keep going because I’m doing it for myself, but also I’m doing it for people who can’t.”
It took 14 months for Swanton to be correctly diagnosed with POTS. During that time, she experienced 25 fainting spells, and each one grew worse. At one point, these episodes began to evolve: She started having convulsions and seizure-like activity. She said it was embarrassing, and people began to avoid her in fear she may have an episode. Her friends grew distant; she had to stop show choir.
The doctors accused her of faking it. They asked if she was being bullied. They asked her parents if everything was all right at home. They said maybe it was just anxiety. They put her on a heart monitor. They ran CT scans, checked for tumors and epilepsy, her hormone levels checked out – everything came back fine. Finally, her cardiologist said, ‘Let me do one last test.’ After moving in various ways – sitting up, laying down with her feet up, sitting halfway up – Swanton and her family finally found the answer.
Like the other 85% of POTS diagnoses, Swanton went through the medical ringer, took test after test and was misdiagnosed many times before she finally found her answers, 14 months later.