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What is POTS? Medford walk to benefit research on little-known disorder

Runners give a thumbs-up to POTS awareness at the start of a charity race.
Runners give a thumbs-up to POTS awareness at the start of a charity race.JOHN TLUMACKI/GLOBE STAFF/FILE 2015

The family of a local woman who is living with a little-known disorder has organized a race Saturday in Medford to raise money for research on postural orthostatic tachycardia syndrome. POTS can cause an array of symptoms that can often be dismissed as unrelated.

“We hope the event inspires POTS patients to continue fighting through their medical challenges,” said Jacqueline Rutter Gully, the organizer of the POTS Walk and 5K. She is also the secretary of Dysautonomia International, a nonprofit that funds research and provides support for patients and caregivers. Her daughter was diagnosed with POTS in 2014 after nearly seven years of misdiagnoses.

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Here are key details about the disorder:

What is POTS?

It’s a form of dysautonomia, a range of conditions that affect the autonomic nervous system, which orchestrates the body’s involuntary functions such as digestion, heart rate, and body temperature. It is clinically defined by a substantial increase in heart rate upon standing, called tachycardia, according to Lauren Stiles, researcher and president of the nonprofit. It is unclear what causes POTS.

What are the symptoms?

They can include fatigue, headaches, light-headedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), fainting, coldness or pain in the extremities, chest pain, and shortness of breath. Some patients can develop a reddish purple color in the legs upon standing, which subsides upon sitting down. This is believed to be due to blood pooling or poor circulation, according to Dysautonomia International.

Who is affected?

The condition affects between 1 million and 3 million Americans, according to the Dysautonomia International website. It mostly affects 12- to 50-year-olds. More than 85 percent of patients are female, according to Stiles. Because of this, the condition can be misdiagnosed as an anxiety disorder or an unusual menstrual cycle. Over 75 percent of patients with POTS are misdiagnosed initially, with an average of more than four years without an accurate diagnosis, according to research by Dysautonomia International, Vanderbilt University, and the University of Calgary. About 25 percent of patients are unable to work, according to the nonprofit. Patients with severe symptoms may find everyday life activities such as hygiene, housework, eating, sitting up, and walking or standing to be difficult.

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Is there a cure?

There is currently no cure. However, the symptoms can be treated. The most common treatment includes medications, increased fluid and sodium consumption, raising the head of the bed, reclined exercises such as rowing or biking, and a healthy diet. With the proper lifestyle adjustments, Dysautonomia International says POTS patients can improve their quality of life.

The POTS Walk and 5K starts at 11 a.m. at the McGlynn Middle School in Medford. Proceeds go to the nonprofit’s POTS Research Fund. Visit www.potswalk.org and curepots.org for more information on the race and on the disorder.


Morgan Hughes can be reached at morgan.hughes@globe.com.