There is a debilitating illness out there that’s effecting the lives of one in 100 adolescents and young adults and it’s known as POTS (Postural Orthostatic Tachycardia Syndrome).

Willie Petty, 14, from Ellicott City is one of them. Sitting at his kitchen table, his legs bounce and his arms flex almost constantly, as he tries reflexively to shake the pain that is so often with him.

Across the table, Candeance Petty watches her son’s anguish and shakes her head. “He’s almost always in pain — his head, his joints, his chest, his side,” she says. Her voice turns hard. “I ask myself almost every day, ‘How can you go from being healthy for 13 years, from being a healthy infant, a healthy child, an all-star, championship football player, to basically home-ridden? How can you have a head injury — and it changes everything?’”

POTS is a form of dysautonomia, according to the website of the Dysautonomia Youth Network of America (DYNA), a nonprofit organization dedicated to adolescents and young adults dealing with the dysfunction. Dysautonomia is a medical term for a group of conditions caused by a dysfunction of the autonomic nervous system, which controls heart rate, blood pressure and digestion.

The many symptoms of POTS include abnormal spikes in heart rate, dizziness, stomach and joint pain, low blood pressure, fatigue, headaches and gastrointestinal upset. Symptoms vary in severity from patient to patient, but all POTS sufferers have difficulty getting the blood to flow out of their lower extremities to their brain -— which explains many of the symptoms.

Millions diagnosed

Although the condition was recognized in medical literature as far back as the Civil War, the name POTS did not even exist until coined by researchers at the Mayo Clinic in the 1990s. Since then, it has been diagnosed with increasing frequency and now affects an estimated 1 million to 3 million Americans — most commonly adolescents and young adults – according to Dysautonomia International, a nonprofit organization that assists people with dysautonomia. About 80 percent of patients are female, according to the DYNA.

But despite the increase in diagnoses, questions still abound about the treatment and prognosis of POTS. The most common treatments are increasing salt and fluids and exercising to strengthen muscles that can push the blood back into the brain, according to Dr. Peter Rowe, a pediatrician who directs the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center in Baltimore. With proper treatment, Rowe said, most (but not all) patients at least improve.

The cause of POTS, however, remains something of a mystery, Rowe notes, and the shortage of research and of pediatricians trained to diagnose and treat the syndrome means many sufferers don’t get the treatment they need.

“We need much better education,” Rowe says. “In an era where visits (to doctors) are short and pediatricians are under tremendous pressure to move patients along, and insurance companies are busy denying proper care much of the time, it’s made it difficult for parents to get what they need.”

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