When Jesica and Edwin Flores’ daughter, Marisa, developed postural orthostatic tachycardia syndrome, (POTS), the North Dallas family found themselves navigating a condition that could be difficult not only to manage, but even to explain.
Their daughter’s symptoms began in 2021, shortly after she received a COVID-19 vaccine. Within hours, she became severely ill. What she initially assumed was a temporary vaccine reaction didn’t go away.
“The days kept going, the months kept going, and it never went away,” she says.
At the time, Marisa was living in Los Angeles and attending college. As her symptoms continued, classes became increasingly difficult and every day activities that had once been routine became challenging. She eventually began researching her symptoms herself and came across POTS, a disorder of the autonomic nervous system that can cause a significant increase in heart rate upon standing, along with symptoms such as dizziness, fatigue and fainting.
A subsequent evaluation confirmed her suspicion: she had POTS.
For Jesica, watching from Dallas as her daughter struggled hundreds of miles away prompted a research project of her own.
“I was obviously, as a mom, very concerned about her,” Jesica says.
She began compiling information about ways patients manage POTS symptoms, from nutrition and increased salt intake to compression garments and other lifestyle strategies. The list grew as the family sought doctors and treatments and attended conferences through Dysautonomia International.
Eventually, friends who knew someone with POTS began asking Jesica for copies of her notes.
“They would be like, ‘Oh, can you send it to me? Oh, you should write a book,’” she says.
Edwin, a biotech patent attorney with a doctorate in immunology from Washington University in St. Louis, brought his scientific background to the project. A longtime Preston Hollow resident, Edwin also served 16 years on the Dallas ISD Board of Trustees and helped develop the district’s Career Institutes initiative. Dallas ISD’s Career Institute North now bears his name.
His background proved particularly useful as the family tried to understand a syndrome that remains an active area of research.
“Every person is different. All our immune systems are different,” Edwin says. “There’s so much unknown out there.”
The resulting book is intended less as a traditional cover-to-cover medical text and more as a reference for people living with POTS and their families. Chapters address different symptoms and management strategies, while reference sections allow readers to find information specific to what they are experiencing.
The family also developed a three-month plan that breaks potential strategies into smaller steps rather than asking someone who is already sick to overhaul their life at once.
Marisa helped make sure those recommendations reflected what living with POTS actually feels like.
“No one who has POTS realistically is gonna do X, Y, Z in one week,” she says.
At her worst, she said she struggled to eat and sleep, stopped driving and working and took a semester off school.
Today, she estimates her symptoms have improved by about 90%. She drives, works and no longer takes medication for POTS. She attributes the improvement not to one solution, but to a combination of time, dietary and lifestyle changes, stress management and other strategies she tried along the way.
The experience also gave her a new appreciation for the support she had from her parents.
“I feel so lucky,” she says. “It was really cool to see that I do have a really good support system because so many people don’t.”
That gap in understanding is part of what Jesica hopes the book can address.
For people with an illness that may not be visible to others, she says, simply being believed can be a hurdle. Her goal is to help patients and their families understand POTS while also increasing awareness among people who may never have heard of it.
The family has already seen the book circulate through its own community. Friends have passed copies to relatives, and Jesica recalled a Pilates instructor keeping one on her desk before giving it to someone who mentioned having POTS.
“That’s the main goal of it: to spread information and help people,” Jesica says. “So it’s happening little by little.”
