Postural Orthostatic Tachycardia Syndrome, or POTS, is a chronic illness impacting the nervous system that debilitates many around the Northwoods.
Research and interest in the condition has expanded as a result of the COVID-19 pandemic.
WXPR spoke with a resident of Minocqua about her experiences trying to find the right care.
Jody's Story:
Jody Bognar and her daughter both love tennis.
Her daughter is 24 now, but back in high school, she qualified for state.
“I used to try and play with her. And I got to the point where, you know, I couldn't even play for 10 minutes, and I was done. You know, I spent my daughter's whole, well, basically her whole life, I've been sick, she has never known me as a healthy person, I've never known myself, as a healthy mom,” said Bognar.
Bognar was diagnosed with POTS, Postural Orthostatic Tachycardia Syndrome, back in 2001.
She’s been dealing with debilitating symptoms from POTS and Chronic Fatigue Syndrome for over 20 years.
Bognar regularly experiences an exaggerated increase in heart rate when standing, lightheadedness, difficulty thinking, exercise intolerance, headaches, a tremor, nausea, and more.
Her daughter, Allison, said that it took years for her to start to fully understand her mom’s illness.
“When I was, like, a lot younger, she kind of tried to hide it and stuff just trying to keep up with me as a kid,” she remembered.
Within the past few years, Bognar and her daughter have had more open and honest conversations about how she’s impacted day to day.
“It's a very, I guess, invisible illness, I'd say. Like, just anybody walking on the street necessarily wouldn't be able to tell how debilitating it is for her,” said Allison.
Rural Healthcare:
On top of dealing with debilitating symptoms, people with POTS report significant difficulty locating knowledgeable providers, particularly in rural areas.
Dr. Satish Raj is a Canadian Heart Rhythm Specialist and Professor at the University of Calgary, as well as Director of Education at the Libin Cardiovascular Institute.
“The bigger fundamental problem is that we don't have great treatments. We need more research into it. We need a better understanding of what's going on. We need to develop better treatments. And then we need to make sure that those can be accessed by patients equitably in rural areas,” said Dr. Raj.
Shannon Koplitz is the Treasurer of Dysautonomia International, an advocacy organization.
She says that more than half of POTS patients travel more than 100 miles from home to receive ongoing care.
“Dysautonomia symptoms can be completely debilitating to the point where the patients are homebound and or bedridden. And so traveling 100+ miles is not only physically exhausting, it's mentally exhausting on them as well,” said Koplitz.
Patients are often reliant on their caregivers and families for support.
“My mom would drive me four and a half hours each way to Mayo Clinic with me laying down in the backseat, I was so sick,” said Koplitz.
At some point, Koplitz said that many patients stop seeking treatment because the obstacles are just too great.
“Why should I go travel 600 miles to a facility I've never been to? How do I know that they're going to be able to help me? You know, that may be a huge waste of my time and energy and money and resources,” she explained.
The Impacts of the Pandemic:
There is some hope that this may be changing- in part due to the COVID-19 pandemic.
“For the Dysautonomia community, it actually was in some ways a blessing because it raised awareness. And it's helping millions around the country obtain the diagnosis that they've been searching for,” explained Koplitz.
A 2023 study found that a significant percentage of COVID-19 survivors develop POTS within six to eight months of infection.
“I'm not glad that there's people having these problems. But I'm glad that at least now, if it takes COVID and takes long COVID illnesses and people to bring about more awareness, you know, I'm glad for that, because it'll help us all hopefully,” said Bognar.
She hopes that research into POTS in long COVID patients will benefit the larger community.
“There's always the chance of in the next years or decades or some kind of, you know, cure or even better management maybe through more awareness,” she said.
Bognar struggles to imagine her future with POTS, but she holds on for her family and loved ones.
“There's times that I think I don't think I can live with this for another 30 years, if I live as long as my mother was 89, 90, that'll be 30 more years. And sometimes I don't know, if I'm gonna make it through the night, I had such a bad night or whatever. But there's times I'm like, you just have to hang on, because who knows what's on the horizon?” she said.
Most of the time, she’s in survival mode, just existing, but on those rare days when she feels like she’s really living, she’s reminded of why she fights.
