Little more than a year ago, Grace Mandel, 18, of Victoria, was a fairly happy-go-lucky teen, who danced and competed as a member of the Chanhassen High School Dance Team.

Though she's always experienced bouts of lengthy illnesses throughout childhood, it didn't compare to how she felt  her junior year in 2017.

Grace woke feeling strange and unwell on the first day of school, which she attributed to the beginning of school. But she continued to feel ill, nauseous and suffer headaches, so much she stopped going to school.

Her concerned parents took her to doctors, made numerous trips to emergency rooms at both Two Twelve Medical Center and Children's Hospital. She underwent a spate of tests, including blood work, X-rays and CAT scans.

Abdominal pain led to further tests, but ultimately, doctors concluded, "everything is normal. I couldn't do anything more but wait it out," Grace said.

Meanwhile, she studied from home, online and with a visiting teacher. Finally, in January, she went to Mayo Clinic in Rochester. There, a doctor suspected postural orthostatic tachycardia (POTS), a disorder affecting the central nervous syndrome causing debilitating symptoms in people who were previously healthy.

Undergoing a tilt table test confirmed what the doctor suspected. Hooked up to monitors and strapped on a flat table, it slowly tilted, measuring her body's physical reactions, including temperature and heart rate. "It's one of the best ways to determine if you have POTS," Grace said. As the table tilted her heart rated jumped from 80 to 150. It was POTS.

"All the things your body does without thinking is interrupted," she explained. The body's normal ability to self-regulate and adjust to temperature, blood pressure, stress, everything — it goes haywire.

"I was at a swimming pool with my grandparents this summer," Grace explained. "It was 96 degrees out, and I was freezing."

After attending a three-week pediatric boot camp in which participants learn how to cope with this chronic illness, Grace is back at school for her senior year. While she isn't able to dance, she was recently named manager of the winter dance team. 

Q: How are you handling this?

A: At boot camp we learned about neuro-pathways, the signals being sent when there is a problem in your body that wouldn’t go away. They taught us diaphragmatic breathing, mental notes to make life easier and reintroducing us to the life of a normal person. 

Q: Is there a cure?

A: You can't do surgery or take meds. Once you’re diagnosed, you have to adapt and adjust your life according to it. It's important to be hydrated throughout the day, to visualize your day and not stress yourself out. The school has been wonderful, checking up on me when I was gone, and then making it an easy transition so I can graduate.

Q: What's next for you?

A: I had to grow up a lot last year. It's made a change in applying for colleges. How will I be successful with this illness plaguing me? How will I amount to anything? I remind myself  I’m doing my best every day. I've toured St. Mary’s in Winona ... its psychology and biology programs could give me a deeper understanding and enable me to do research. I'm thinking of psychology or the medical field, being involved in people's lives with chronic illnesses, to be in a research program as one of them.

Events

Recommended for you