POTS kills quality of life for millions of teens

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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.

POTS Willie Hosp1 WEllicott City teen Willie Petty curls up on a hospital bed on a visit to try to get to the bottom of his illness, POTS.“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.”

Click next below to find out what causes POTS

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