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The Ups and Downs of POTS

Nadia, age 14, Ohio

I was diagnosed with POTS in March of 2020, and am passionate about sharing my story to help others and also to raise awareness for this condition. At the beginning of January, I had a pre-syncope episode at school. Of course with the nature of POTS, my heart rate and blood pressure were sky high during the episode. An ambulance was called and I was immediately taken to the hospital. The doctors ran a lot of tests to try to figure out why I had almost fainted - EKGs, lab work, and a CT scan were immediately done.  Unfortunately, the results were negative except for a low potassium level. They sent me home with no diagnosis and no treatment. Before I got out of the hospital lobby, I had another episode, this time in full syncope. I was admitted to the ICU and had high hopes that they would find some answers. During my stay, I had an echocardiogram and multiple rounds of orthostatics completed. Again, nothing was found. My symptoms were pushed off as anxiety. Again, I left the hospital without a proper diagnosis. I eventually had a tilt table test done that was read by a pediatric cardiologist. Finally, I was diagnosed with POTS.

In the first few months after my diagnosis, I was wheelchair bound and felt absolutely hopeless. But I never gave up. I worked on my physical therapy exercises and consumed lots of fluids and salt. I improved so much that I am now able to participate in club and high school soccer. It’s been a long, hard journey. I still have days where I can’t even lift my head off my pillow. I feel defeated at times, but remind myself how much of a fighter I am. This organization is something that I am very passionate about. POTS is a debilitating illness that is not commonly known amongst doctors. I want to be able to raise awareness for this illness and to help other people like me.

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