Isanti woman battles life-changing syndrome
Benefit for Deanna Fletcher Dec. 16
When Deanna Fletcher wakes up every morning, she has to lie in bed and do simple exercises for half an hour before she can stand up, or she risks an excessive heart rate and blacking out.
The 19-year-old Isanti woman was diagnosed in 2010 with a form of dysautonomia called postural orthostatic tachycardia syndrome, or POTS. The chronic illness affects Deanna’s autonomic nervous system (ANS), which regulates basic organ functions such as blood pressure, heart rate and breathing. Dysautonomia is a malfunctioning of the ANS, causing dozens of symptoms on a daily basis including dizziness, blackouts, rapid changes in heart rate, headaches, fainting, difficulty breathing, nausea and many more.
After two years with this life-changing syndrome, Fletcher’s family received word that Deanna can be seen at a specialty center at the Mayo Clinic in Rochester for patients with the condition. She’s scheduled to check in Jan. 7, and will be staying a minimum of one week.
Due to the medical expenses, the Fletchers are holding a silent auction at the Isanti VFW for donations and support Sunday, Dec. 16, from 10 a.m. to 2 p.m.
Deanna was a competitive dancer and a member of the Cambridge-Isanti High School track team. She was always on the go, whether with the Girl Scouts, off with friends or at her part-time job.
She loved riding ATVs, hiking, kayaking and camping. Most of those favorite activities came to an end in 2010.
Deanna underwent knee surgery in June 2010 and started experiencing frequent dizziness, nausea, fatigue and pain throughout her body, her mother, Tawnay, said.
At first doctors thought Deanna was reacting to the pain medication. After switching the prescription several times, she was pulled off of them completely.
By September, she was missing school, started having fainting spells, suffered from a high heart rate upon changing positions, could no longer drive and couldn’t function through a “normal” day, Tawnay said.
“I was really sick and tired and couldn’t figure out what it was,” Deanna said. “In my junior year, I missed over 80 days of school.”
Soon Deanna lost her job and frequently stayed at home. Doctors tested her for Lyme disease, mono, West Nile virus and more, but results all came back negative. When Deanna started having digestion problems, doctors tested for food allergies, but they still found nothing.
In October 2010, doctors began to believe there was something wrong with Deanna’s heart. She was admitted to the hospital for three days and doctors discovered she suffered from a racing heart and blood pressure changes from a simple position change.
Deanna tried to continue dancing, but ended up in the emergency room after fainting and falling. In March 2011, Deanna’s legs seized up and she could not move. Her breathing was off and her heart rate changed rapidly from high to low. After rushing to the ER, Deanna was transferred to Children’s Hospital in St. Paul.
There she underwent a spinal tap and many more tests to confirm a diagnosis of postural orthostatic tachycardia syndrome (POTS).
Living with POTS
“Everything my body is supposed to do automatically, it has trouble with,” Deanna said.
Over the last two years, Deanna’s life has changed dramatically. Because of the difficulties of living with the symptoms, Deanna transferred out of Cambridge-Isanti High School and enrolled in an online high school, graduating on time in June 2012.
According to the National Dysautonomia Research Foundation, it is estimated that over 500,000 Americans are afflicted with orthostatic intolerance. Despite the number, these conditions are among the least understood of the autonomic disorders and often tend to be misdiagnosed as either a psychiatric or an anxiety-related disorder due to the nature of the symptoms.
The onset can be sudden, and the impact can be significant on both lifestyle and on the capacity to work.
“There is no cure,” Deanna said. She wrote a list of over 40 symptoms she can experience on a daily basis that she said makes functioning “normally” difficult. She takes medication to regulate her blood pressure and heart rate, which makes it easier for her to get around.
“If I don’t take it, my heart rate will be in the 20s when I’m sitting, and as soon as I stand up, it will go all the way up to 190, so I would end up passing out,” she said.
Deanna’s brother Dylan was also diagnosed with POTS, but his case isn’t as severe. Dysautonomias are possibly genetic and patients are born with it, with symptoms flaring up when something triggers it — in Deanna’s case, her knee surgery, and in Dylan’s case, after he contracted both Lyme disease and West Nile virus.
“It really kind of puts things into perspective. It’s a huge list of symptoms, and you wonder, ‘How is she walking?’ You look at her and it’s one of those hidden illnesses,” Tawnay said. “It’s things that the average person takes for granted that she struggles with, and for her it’s frustrating.”
Multiple colleges told Deanna she could not live on campus, so she’s currently taking classes through the online program of the University of Phoenix and plans to major in psychology with her master’s degree in clinical/child psychology.
Deanna said she has difficulty concentrating due to the lack of blood flow to her brain, so online college where she can work at her own pace and on her own schedule has helped.
One of the ways Deanna copes is through a support group she started on Facebook, which now has over 600 followers.
“What helps me get through is helping other people with it,” Deanna said. “I’ve been talking to people from all over the world on that page.”
The Mayo Clinic
The specialty center at the Mayo Clinic will test the limits of Deanna’s body.
“They’re testing to push her body to an extreme to see where her tolerance levels are,” Tawnay said. “And then they can say, ‘To counteract this symptom, this is what you need to avoid, and this is what you need to do.’”
For instance, in order to keep her body running more smoothly, Deanna needs to stay hydrated — but with three gallons of water per day rather than the typical eight glasses.
POTS patients who go through the Mayo Clinic’s specialty center can have up to 80 percent of their symptoms relieved, Tawnay said.
“It’s huge,” Tawnay said. That’s why they’re so hopeful about the program. When the Fletchers found out about the center, they submitted an application and were put on a wait list. In October, the Mayo Clinic contacted the family and said Deanna’s turn had come.
“We are blessed because we do have health insurance, but we have a high deductible, so we’re going to need money for the out-of-pocket expense at the beginning,” Tawnay said.
They earned over $500 at a garage sale in November, but they’re still $3,000 short of reaching their deductible. At the silent auction Dec. 16, some of the items include a one-hour massage, a half-hour paragliding ride and items and services donated from local businesses.
Deanna said she hopes going to the Mayo Clinic will help her progress in life.
“The relief of the symptoms alone would help a lot,” she said. “I want to be able to have a job and get my own money and be able to move out, live on my own, be able to drive and be independent. That’s my goal, and this is just part of getting there. This should help a lot.”