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Finding balance: Leesburg teen battles symptoms, isolation of obscure disease

Lexi Bognar, 13, at her Leesburg home with her mother, Wendy, while 10-year-old sister, Gwen, tries to photobomb the shot. Bognar was diagnosed with POTS in 2014, a disease which can cause imbalance, fatigue and depression. Times-Mirror/Anna Harris
Lexi Bognar, 13, of Leesburg, sat on the couch of her home curled up. The bandage on her arm covered the IV pick through which she'd feed medicine to her heart later that day.

Sitting is easier for Bognar, and safer. She fell the week before, fainting outside waiting for her vivacious 10-year-old sister, Gwen, at the bus stop. The imbalance from Bognar's Postural Tachycardia Syndrome, also known as POTS, caused her concussion in 2013.

POTS effects the heart's ability to evenly distribute blood through the body.

When she was diagnosed with the obscure disease in 2014, it wasn't long before her family took her out of Simpson Middle School. She was falling too much, and the risk of getting another concussion was too great.

The cruelty of her classmates was incentive to leave public school, too.

Bognar had been the butt of rumors since she first started having problems and the concussion. “You should be over it by now,” they said. “You're faking it.”

After she was diagnosed and explained to classmates that she had POTS, rumors flew that Bognar was a drug addict.

“There were rumors that my dad was giving me drugs, that I was drinking and smoking, that I'm going to die and go to hell,” Bognar said, her voice measured and light. POTS sometimes makes breathing difficult.

The turning point

In January 2014, Bognar's mother, Wendy, found her daughter on the floor covered in her own vomit.

Wendy Bognar picked up the eighth- grader – seventh grade at the time – off the floor and set her down on the couch. But Lexi fell over. That's when the Bognar family knew something was wrong.

She quickly grew tired, she vomited whenever she got sick and she would fall over or faint without warning.

Bognar was diagnosed with POTS in the following months.

The diagnosis wasn't immediate. Many hospitals don't have specialists familiar with the symptoms of the disease, and misdiagnosis is common.

Unable to find any answers to what might be causing the symptoms, the doctors at Loudoun Inova Hospital referred Lexi Bognar to an in-hospital psychiatrist, who told her her symptoms were from depression (85 percent of POTS patients are told the symptoms are just in their heads, according to dysautonomiainternational.org).

Finally, they visited a doctor who strapped Bognar to a moving table and hooked her up to a monitor to measure her blood pressure. If her blood pressure dropped or increased dramatically when they tilted the table, it was likely she had POTS.

Bognar didn't make it five minutes before she passed out on the table.

Now, Bognar takes pills every four hours and feeds medicine directly to her heart every night through an IV.

While the exact cause of the disease is unknown, POTS can be genetic or appear after the patient contracts Lyme disease.

In Bognar's case, Wendy Bognar believes she always had it in a mild sense. Lexi Bognar was diagnosed a few years ago with babesia, an infection affecting red blood cells often associated with Lyme disease. Wendy Bognar thinks it escalated the POTS symptoms.

An isolating disease

Abby White, 17, of Tuscarora High School in Leesburg, rolled through the grocery store in an electric buggy with her mom. She had thrown her back out and wasn't taking any chances with her POTS symptoms.

A woman approached her, someone she'd never met.

“My daughter has POTS, and I understand how it is,” Wendy Bognar told her.

“I kind of looked at her like, 'how does this woman know I have POTS. This is weird.' I didn't even say anything abut it,” White said. “[POTS patients] we feel like we're alone … That's the biggest issue, you feel like you're alone in everything. And you're not. I'm glad that Lexi's mom ran into me because I was alone through it and no one understood it.”

Since then, White and the Bognar family have kept in touch. For White and Lexi Bognar, the connection is a lifesaver. Having someone to talk with who understands what it's like to live with the disease brings home the reality that they aren't alone.

According to Wendy Bognar and her husband, John Bognar, they know other kids in the area with the disease, though the symptoms are less severe than Lexi Bognar and White's.

White and her mother plan to start an awareness and support group for others in the community with the disease.

Even so, the misinformation or lack of education on the disease has alienated people from their previous lives.

Bognar only keeps in touch with a few friends from school. Social media is both a gift and a curse, as it keeps her in touch with the wider world while opening her up to cyber-bullying and harsh accusations.

White's high school peers spread rumors, too.

In high school, POTS caused her to bloat, and when she left school, students at Tuscarora said she dropped out because she was pregnant. It wasn't long before White's boyfriend broke up with her.

She practice Reiki therapy for awhile, a Japanese relaxation and stress relief technique, which she said helped her symptoms and decreased the need for the 10 or 11 pills she was taking every morning.

Her symptoms have escalated lately, though. Like Bognar, she hopes the disease will go away. In her case, the disease is genetic. Her mother had it, and her brother was recently diagnosed.

“If it's genetic, I could pass it on to my children on top of everything,” she said. “I'd rather adopt a child than give them POTS because it is so difficult. Who knows what the future holds.”

Roughly 80 percent of POTS patients are young women. Some see their symptoms decrease or diminish when they reach their 20s, according to DysautonomiaInternational.org.

Bognar used to play field hockey and was a regular student, John Bognar said. The family hopes with treatment she'll soon be well enough to go back into public school and play any sport she wants.

Lexi Bognar's church, McLean Bible Church in Leesburg, has been her main social outlet and a champion for their fundraising efforts for the treatment expenses.

John Bognar has also taken on the brunt of the fundraising efforts. He's taking advantage of his time on extended medical leave from chronic Lyme disease and cognitive memory issues.

So far, their TeamLexi GoFundMe account has raised $10,920 of its $50,000 goal.

Lexi Bognar has big plans for her future, whether the POTS goes away or not. She's an artist, editing photos on her iPad and drawing.

She wants to be an actress, a singer or a rapper.

“I rapped for my physical therapist, and he was like, 'wow that was awesome' and high-fived me,” she laughed.

Comments


Makes you long for the days before DDT was banned. Every hotel wasn’t infested with bedbugs and Lyme disease carrying ticks weren’t on every sq inch of ground.

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