Pedaling for POTS: Brother honors sister with fundraiser
“It’s known as the invisible illness,” Karen Rogers said about Postural Orthostatic Tachycardia Syndrome, a disease her daughter, Peyton, was diagnosed with last spring. “It’s really hard on your child, but as a parent it’s so incredibly hard when you seen your child constantly sick and missing out on life.”
Peyton, a senior at Brookhaven Academy, was diagnosed with POTS last spring. She is one of an 2 to 3 million people in the U.S. who suffers from the syndrome. She and her family often meet people who don’t take it seriously because there’s a lack of awareness or understanding.
Chandler Rogers, Peyton’s older brother, decided if nothing else, he could help tackle that problem with what he’s calling Pedaling for POTS. Chandler, a senior at Arkansas State, is currently coordinating a massive undertaking – he and about 100 of his Pi Kappa Alpha fraternity brothers will bike 250 miles over the course of approximately 20 hours from Arkansas State in Jonesboro, Arkansas to the PKA house at Mississippi State University in Starkville.
“It’s awesome that he would do this for, not only me, but also all the other people who have this,” Peyton said.
Chandler is also raising money for Dysautonomia International. He and his fraternity brothers have set a goal of $10,000.
Although Chandler, a 2011 Brookhaven Academy graduate, attends Arkansas State, he has deep connections to Mississippi State. Both of his parents are alumni, and his uncle is a former PKA president at Mississippi State. He also has several friends who attend MSU, including Amy Hoover, who was diagnosed with POTS three years ago.
“When [Chandler] told me about it, I was pretty excited because not many people are aware of POTS,” Hoover said.
“I don’t want people to pity,” she said. “I just want awareness.”
Chandler came up with the idea when he read an article about a man who ran 33 miles nonstop to raise money for cancer.
“I figured we could go farther on a bike,” he said.
Chandler and his fellow PKAs will set out April 17. They plan to arrive in Starkville on April 18.
What is POTS
Dr. David Braden, pediatric cardiologist, described POTS as a syndrome made up of a variety of symptoms, such as dizziness when standing or sitting, fatigue, headaches, fainting spells, chest pains, racing heart rates, constipation, bloating, trouble focusing, sweating or sleep issues. The range of symptoms is what can make diagnosis difficult.
“It almost makes you feel like you’re going crazy,” Hoover said.
Braden said case to case, the syndrome produces different symptoms with varying degrees of severity. Braden said the most common symptoms are dizziness and headaches.
Braden explained when a person has POTS, the heart does not receive enough blood when standing or sitting. To compensate, heart rate increases, and the blood is pulled away from the brain. Without blood, the brain does not have the oxygen it needs causing these symptoms.
Braden said they have medicines that have various degrees of success. Doctors also do what they can to keep the symptoms at bay. Although some never see improvements, 60 percent of patients continue to improve, and 20 percent of cases result in the symptoms being resolved.
Sometimes cases do not have a known cause, but sometimes it can be triggered by another illness.
“Someone gets mononucleosis and never gets over it,” he gave as an example.
It is also four times more common in females than males. Most people are diagnosed in their late teens or early in adulthood.
The key treatments include rest, exercise, lots fluids and salt.
Adjusting to life with POTS
“This whole journey has been a learning process,” Peyton said.
Peyton described living with POTS as an unpredictable way of life. One day she may have a minor headache or feel tired, and the next day, the symptoms can completely change. Peyton said one of her most challenging symptoms is brain fog, or difficulty focusing.
Before she became sick, Peyton said school came easy for her, and she rarely had to study. Now, class Peyton may zone out for five minutes or so during class. Later, she has to teach herself lessons she may have missed. However, that’s not the end of the struggle for Peyton. She said that sometimes when she gets to a test, the brain fog will cause her to completely forget everything.
The other challenge Peyton faces is people not taking her illness seriously.
“They assume I’m fine because I can sometimes go to school or because I don’t look sick,” she said.
Although Peyton was diagnosed last spring, she suffered from symptoms for about two years before that.
“A lot people thought she was putting on, and that stems back to she looks fine,” Rogers said.
During that unknown period, Peyton was seeing Dr. Edward Moak, an internist. Moak kept running blood work and testing on Peyton trying to search for a cause. At the time, Braden had assisted with heart monitors a few times.
After speaking to Nancy Hoover, Amy’s mother, about POTS, Karen went to Dr. Moak and asked if that could be what’s wrong with Peyton. Moak and Braden discussed the possibility, and before long, Peyton was participating in a tilt test. During the test, the heart is monitored while a table is tilted to 70 degrees.
Finally, they had an answer. Now, Peyton and her family are learning to adapt to POTS. Karen said she is grateful for the dedication from Moak and Braden as well as the reassurances when something new happens.
“Some of the most strange things come up,” she said. “They’ll say it’s crazy, but normal, or come see us immediately.”
The journey for Hoover was quicker although not without its share of scares. Hoover, who fought and beat cancer her senior year of high school, began suffering from symptoms her freshman year of college.
“It was scary because I didn’t know if it (cancer) was coming back,” she said.
Hoover, a former stand-out soccer player, said she particularly noticed symptoms while she was playing.
“It was frustrating knowing how I used to be able to perform,” she said.
Although Hoover also suffers from frequent brain fog, it has not affected her grades. She has just worked to stay on top of her schoolwork when she feels well.
“If I wait, I may not be able to do it to the best of my ability,” she said.
But Hoover can’t help but see the bright spot.
“For me I was very blessed to go a couple months before being diagnosed,” she said. “A doctor that listens makes all the difference.”