OUR FOUNDER'S STORY
“My heart raced, beating so hard I thought it might jump out of my chest. Then everything went dark.”
-Amanda Swanton, Executive Director
The A85 Cure Foundation.
The symptoms first showed up my sophomore year of high school. At that time, I was focused on academics, show choir, theatre, friends – living a normal, happy life.
One Monday I headed to school and moved through my schedule as usual. But in the middle of 7th period, a weird feeling came over me, one that would become all too familiar in the months ahead.
All of a sudden, I felt incredibly hot. My heart raced, it was beating so hard I thought it might jump out of my chest. Then everything went dark. The next thing I remember is looking up at my teacher, who was bent over me, a worried look on his face. In the blink of an eye I’d gone from sitting at my desk to sprawled out on the floor, unconscious.
How bizarre is this? I remember thinking. But as I recovered, it somehow seemed like no big deal. The school nurse thought I’d probably passed out from dehydration. She called my Mom, who came over and picked me up. I was careful to drink more water for the rest of the week, believing I’d be fine.
But the following Saturday at choir rehearsal it happened again.
"One minute I was looking across the room at our choreographer, and the next I was looking up at him from the floor where I’d passed out."
This time my parents weren’t taking any chances. They rushed me to the emergency room where doctors ran test after test. They were baffled and so were we. Aside from environmental allergies and asthma that had been diagnosed I was a healthy young lady. Things just didn’t add up.
The ER physician suggested I see a cardiologist, who ran even more tests, recommending that I continue drinking more water while wearing a heart monitor for several weeks. I did my best to feel normal with this awkward device attached to me throughout the day.
Over the next several months I also saw a neurologist, my pediatrician, a gynecologist and an asthma and allergy specialist. None of them could explain what was happening to me.
Meanwhile, the fainting spells happened more often, sending me crashing to the floor at the most random moments. They started to look like seizures, which began to scare people. Some classmates and teachers who had always been friendly and supportive began to act differently around me. A few made false assumptions about what could be going on with me.
As the months went by I started to feel lonely, frightened and discouraged about the future. How many more medical tests and appointments could I endure, especially when they all seemed to be leading nowhere?
My social life was really dull at times, I could not drive, so I watched a lot of basketball. I loved seeing my favorite player, Stephen Curry, number 30 with the Golden State Warriors. In an interview I watched once, he said: “Every time I rise-up, I have confidence that I’m going to make it.”
I found myself clinging to Stephen’s words. I knew I couldn’t let this medical mystery take over my life. Every morning, even though I felt nervous about what the day would bring, I pictured myself rising-up in spite of the unknowns.
Fast forward to the following November, more than a year after my first collapse. I was in my cardiologist’s office, waiting for the latest test results. Finally, she had some real answers. The dizziness, the racing heart, the sudden waves of heat and the fainting spells were all part of Postural Orthostatic Tachycardia Syndrome, or P.O.T.S.
"At last, I thought - this is real. It has a name and now, maybe there will be a solution."
Doctors said that with the right treatments my symptoms could be controlled. That was awesome to hear, but I found it hard to accept that there was no true cure for P.O.T.S. -- no guarantee of a relapse and I came to the realization that I may not die from P.O.T.S. but I will die with P.O.T.S.
Which made me wonder: how many other people are going through the same ordeal I’d just been through on their way to a P.O.T.S. diagnosis?
My Mom and I began to read everything we could find and learned that an amazing 85% of all P.O.T.S. sufferers are initially diagnosed with something else. Turns out that P.O.T.S. is a relatively new diagnosis, and even though it’s been widely discussed and written about for 20 years, not all doctors know about it. Outside the medical profession, awareness is even lower.
"No wonder so many P.O.T.S. sufferers worry that these troubles are “all in our heads."
"We can do better, together"
With the loving support of family, friends and my local community, I’ve created the A85 Cure to spread awareness and raise crucial funds for research going on right now to create powerful new treatments for P.O.T.S.
The “85” in our name reflects the sufferers whose symptoms are overlooked or misdiagnosed at first. I believe that, working as a team, we can change that number. We can help more people learn about P.O.T.S., invest in the research studies already under way at hospitals across the country, and support one another in the search for healing and progress.
On behalf of my family, my school, my friends and caring members of my community who are now part of the A85 team, I extend my heartfelt thanks. Now is the time to for us to RISE together for a cure!