POTS kills quality of life for millions of teens

Article Index

 

What causes POTS

On its website, the DYNA agrees that pinning down the cause of POTS in patients “can be very difficult,” and sometimes impossible. Still, a number of possible underlying diseases and conditions have been identified, including genetic disorders, low blood pressure and trauma.

For Willie Petty, the cause was simple. On May 19, 2014, while riding in the back seat of his mother’s vehicle, another car pulled onto Route 40 in front of them. In the ensuing collision, Willie slammed his head on the front seat. He was knocked unconscious and rushed to the hospital where he was diagnosed with his fourth concussion in 18 months. (Although he was a standout football player on a youth rec team, none of his concussions were football-related, his mother says.)

In July, after an endless series of emergency room visits and blackouts, countless tests, and general puzzlement over the headaches and pain that never went away, a cardiologist finally diagnosed Willie with POTS.

While some “POTSies,” as young people with the syndrome are sometimes called, can function almost normally, Willie can't. His severe pain, frequent insomnia and limited focus have upended his life, and that of his mother and two older brothers. (His father is dead.) Willie missed 85 percent of school the first year following his accident, and this year, he’s attended only a handful of days. Instead, he stays with his oldest brother, Tony, and does schoolwork online. He takes about 10 prescription medicines and supplements a day, and while he yearns to play football again, that seems increasingly unlikely.

Asked if he expects to get better, Willie struggles for words and finally says, “To be honest, no. ... unfortunately ... It kind of feels that way.”

Life with POTS

POTS Tiffany Phelps WTiffany Phelps, 20, was a cheerleader just starting college when she was diagnosed with POTS. For 20-year-old Tiffany Phelps, the cause of her POTS was harder to diagnose. Until she started college, the Glen Burnie resident had been symptom-free and physically active — a cheerleader for 11 years. But on her first day at Anne Arundel Community College, in August 2013, she had to leave school because she wasn’t feeling well. She never made it to that first class, and hasn’t been back since.
Doctors initially told her she was just dehydrated. But she passed out a month later — and then again and again over the next several months.

Finally, she was diagnosed with POTS. Months after that (and following a change in doctors), she was told the cause was Ehlers-Danlos syndrome, a genetic disorder that affects the skin, joints and blood vessels.

Today, Tiffany can’t drive, lives at home with her mother and 5-year-old sister, and has trouble walking many days. She sometimes talks with her fiancé and friends, but getting out and socializing is difficult, so she spends a lot of time at home with her two Pomeranians — her “therapy dogs,” she calls them.

“Any kind of planning or hanging out is really hard because you never know how you’re going to feel,” she says.

It’s quite a change for the former cheerleader. “It’s very difficult,” Tiffany concedes. Her physical therapist recently told her to do 10 squats and she had to stop halfway through because she felt like she was going to pass out. “I think of what I used to do, and I can’t even do a quarter of that now.”

Catherine Lilly can sympathize. The 19-year-old Elkridge woman was diagnosed with POTS about five years ago and, like Tiffany, lives at home with her parents and her younger sibling. Also like Tiffany, Catherine’s condition was genetic: Her father, Charles, and 14-year-old brother, Benjamin, also suffer from POTS — the result, in all three, of being born with Ehlers-Danlos syndrome.

Catherine’s most pronounced symptoms are frequent gastrointestinal problems, says her mother, Krissy Lilly, but she also tires easily and never knows from one day to the next how much activity she can handle.

“It kind of changes every day,” Catherine explains. “You find something new — new symptoms, different symptoms. You just don’t know when they’ll hit you. But I guess it’s pretty natural for me at this point.”

Support network

One thing both POTSies (and their parents) have in common is a firm belief in the value of support groups. There are several such groups, with names like POTSability and POTSibilities Parents, and they have a strong social media presence and often host regular face-to-face get-togethers as well.
“They’re amazing,” says Candeance Petty, who uses the groups to share information and tips on such things as new drugs and helpful doctors.

Tiffany Phelps says talking to someone who understands POTS can be invaluable. “The hardest part about POTS is people don’t see it,” she says. When she meets old high school classmates and tells them her condition keeps her from working or going to school, they’re often skeptical, she explains.

“The thing that’s helped me the most is finding support groups and talking to other people that have it,” Tiffany says. “It’s so important to meet other people who understand what you’re going through.”

A positive attitude also helps, which is what Willie Petty relies on. “I’m the type of person that doesn’t really worry about stuff,” Willie says. His attitude has helped him cope with his condition, according to his therapist. It also amazes his mother.

“We go to the doctor and they ask him on a scale of one to 10, what his pain is, and he says, ‘10’,” Candeance Petty says. “And I think, ‘You know, with that Ronald McDonald smile, you cannot be at a 10. I was at 10 when I was giving birth to you and I was not smiling.’ But Willie doesn’t really show his emotions.”

Candeance Petty, less reluctant to do so, sometimes can’t hide her anger over what has happened to her youngest child.

“We’re a year-and-a-half into this POTS thing and I’m tired of it,” she says. “I want to send it back to hell, where it came from.”

By Pete Pichaske

© 2018 Chesapeake Family Life. All Rights Reserved.