Clark County residents and people from all over the country assembled for the third annual “Standing Up to POTS” 5K race at Wittenberg University on Sept. 24.
The event raised awareness for Postural Orthostatic Tachycardia Syndrome (POTS), a rare and sometimes fatal chronic illness.
Approximately 540,000 Americans are stricken with POTS, and one in 100 U.S. teens live with the disorder. Females between the ages of 15 and 50 are the most at risk, but anyone can develop POTS at any time.
The exact cause of the syndrome is unknown, but it typically develops after experiencing stressors such as major surgery, trauma, pregnancy, or even a viral infection like Mononucleosis (Mono) or Lyme disease.
POTS causes dysfunction of any number of “automatic” bodily functions like heart rate, blood pressure, digestive tract movements, eye sight, and body temperature. POTS sufferers deal with dangerously low blood pressure, which causes blood to pool in the legs and abdomen instead of properly circulating to the brain and heart.
Many symptoms are the same found with stress and depression; such as fainting, exhaustion, dizziness, and chronic pain. Those copy-cat symptoms, and the sheer rarity of the illness, can cause deep frustration for POTS patients when they are seeking a diagnosis for what is wrong with them.
Brienna Haytor is 20-years-old, attends Cedarville Universty, and was diagnosed with POTS nine months ago. Hayter’s symptoms included fainting over 256 times. “It hit me like a brick,” says Hayter.
Hayter expresses what many POTS sufferers go through before being diagnosed.
“(Doctors) had no idea what was going on with me. They were saying that maybe I had anxiety or depression...or maybe I had a traumatic event. But I’m like, ‘I’ve had a really happy life’...so, yeah, getting diagnosed was a huge weight off my shoulders. I’d suspected something was going on, but now it finally had a name.”
Once a diagnosis is made, many POTS patents feel relief that what they are experiencing is a real illness and not “all in their head.” Unfortunately, learning there is no cure for the syndrome can temper relief with fear for both sufferers and their families.
A lack of public awareness about POTS causes problems for sufferers, especially young people.
Michaela Otstot (18) had to quit cheerleading and playing sports at Shawnee High School. Heat makes POTS symptoms worse, so she would also stay home from school on particularly hot days. Onstot says even after she was diagnosed, school officials had trouble believing her. “They would say, ‘You don’t look like anything’s wrong,’ so it was hard to make them believe me.”
Northwestern student, Lily Pederson, has had POTS for four years. She says she is unable to pursue the academic goals she has always dreamed of because of the problems POTS causes her.
“You have to make the decision to go for Salutatorian or Valedictorian as a Freshman, and to do that you have to take a certain number of AP credits, which brings a larger load. I can’t handle that large of a load because of my illness...so that’s out the window. I may not even be able to graduate on time because of my condition,” explains Pederson in frustration.
POTS makes excessive movement dangerous and largely out of the question. It also causes “brain fog.” Both are sources of frustration for many POTS patients, who say they miss being able to think and be active, “I miss exercising and being outside. Now I’m tired all the time...I really miss being in shape” says 36-year-old Jamie Ennis.
Wittenberg graduate, Ria Tignor, planned the first Standing Up to POTS 5K with Wittenberg’s Pre-Health Club, who continues to help sponsor the event.
Tignor says participation in the Standing Up to POTS 5K has tripled in only three years. The first year 48 participants raised $3,000. This year 271 participants raised over $13,700 for POTS awareness.
Tignor says she would love to see communities everywhere doing Standing Up to POTS 5K events.
“The sooner people learn about POTS, the more understanding there will be for its sufferers and the sooner we will find a cure.”