Runners and walkers from across the U.S. made their way to Wittenberg University on the frigid morning of April 9 for the second annual Standing Up to POTS 5K Run/Walk coordinated by the Pre-Health Club of Wittenberg University. The race was held in order to raise awareness of the little-known illness and was inspired by the story of Lily Pederson, a Northwestern Middle school student who suffers from the debilitating, chronic condition.
Pederson developed the debilitating POTS syndrome at only 10-years-old and her illness drastically changed her life and that of her family.
Pederson wrote a book titled, My Life with POTS, for a Young Authors contest and the book was published and distributed to thousands of doctor’s offices, thanks to support from Thrivent Financial in Tipp City. The Pederson family created an internationally-known non-profit organization, Standing Up to Pots to raise awareness of the syndrome. They also started two POTS support group pages on Facebook that POTS sufferers across the U.S. and around the world use to help support each other, Pederson serves as Administrator for the Teen Support Group Facebook page.
“POTS” stands for “Postural Orthostatic Tachycardia Syndrome.” Approximately 540,000 Americans are stricken with POTS, and one in 100 U.S. teens live with the disorder. Pederson is one of two Northwestern students living with POTS. 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, as in Pederson’s case, a viral infection like Mononucleosis (Mono) or Lyme disease.
Dr. Cathy Pederson is Lily Pederson’s mother and a biology professor at Wittenberg University. Dr. Pederson says her daughter was a healthy, normal child before she was stricken with POTS following a bout with Mono around the age of 10. “She would run, play, do all of the normal childhood things healthy kids are able to do,” says Dr. Pederson, “then she contracted Mono and just wasn’t recovering like she should have. After months and months of testing and doctors’ visits, we found out she has POTS...we also found out there is no cure.”
Lily Pederson says the first thing she noticed was a feeling of “crushing fatigue” and intense pain.
“I couldn’t do anything,” says Pederson, “I was in constant pain. I would lie on the couch for hours and hours, not moving a muscle. Mom told me that there were times she could only tell I was alive because she would see my chest rising and falling. The smallest movement made my body hurt. If I tried to stand up I would just pass out... I couldn’t play outside or do anything I liked anymore because I was just completely fatigued and hurting.”
POTS causes dysfunction of any number of “automatic” bodily functions, including heart rate, blood pressure, digestive tract movements, eye sight, and body temperature. The fainting spells described by Lily Pederson is a trademark symptom of POTS because it causes dangerously low blood pressure, which, in turn, causes blood to pool in the legs and abdomen instead of properly circulating to the brain and heart.
Lily Pederson is able to walk extremely short distances, but doing so is risky and she has largely been confined to a wheelchair since she was 11-years-old. “Walking isn’t really good for me,” says Pederson. Some POTS sufferers, such as 5K participant, Jeanie Bright, are able walk longer distances but wear helmets to prevent concussions caused by their frequent fainting spells. Bright is a wife and mother who developed POTS two years ago and has suffered extreme short-term memory loss due to head injuries. “My family would lovingly call me “Dory” because I would have a conversation with them one minute and then completely forget it the next,” says Bright.
POTS sufferers can experience frustration in trying to get a diagnosis for what is wrong with them.
“My son wasn’t sick or anything. He would just pass out and we didn’t know why,” says the mother of POTS patient, Joe Fritchman. “Tests didn’t show anything. One doctor said it was his heart and gave him a pacemaker that my son eventually demanded they remove because it wasn’t working; he felt the same way as before. All of the medicines we’ve tried seem to just make things worse. It’s frustrating when you know something is wrong but the doctors have no clue what it is.”
The Pederson family and Wittenberg’s Pre-health club hope that an annual Standing Up to Pots 5K Run/Walk event will continue to raise awareness of POTS Syndrome. In the meantime, Lily Pederson and other POTS patients around the world will continue to deal with the struggles they face in trying to live as normal a life as possible in the face of a chronic, debilitating, little understood, virtually unknown illness.
Visit http://standinguptopots.org/ for POTS resources and more information about the Standing Up to POTS organization.
Sponsors for the Standing Up to POTS 5K Run/Walk are the Wittenberg Tiger Fund, Thrivent Financial (Tipp City), Comfort Living, Dr. Keith Boor MD, Dr. Gary Thomas DDS, Meijer, Wells Fargo Home Mortgage, the Law Office of John M. Spencer, Springfield Fire and Rescue, and Dhingra Orthodontics.