Lifelong Exeter Township resident Derek Evans was an athletic teenager until he started experiencing frightening physical symptoms. The quest to find the cause led to a diagnosis of postural orthostatic tachycardia syndrome (POTS), a rare, chronic condition characterized by sudden rapid heartbeat and dizziness. Despite the news, Evans pressed on with life, until his health prevented him from working. He then turned his attention to researching the disease and literally wrote the book on POTS. Now 26, Evans is an author and lecturer, raising awareness about POTS and creating a vital community for those affected.
Q. How did you first become concerned about your health? I was in high school and involved in sports – basketball, volleyball and swimming – and started having symptoms, when playing sports and when I wasn’t. My heart would race when I was standing up. I’d also have chest pain and blackouts. I would lie down, and the dizziness and discomfort would go away. It was very confusing. I remember lifeguarding at the Antietam pool, and my heart would begin racing just sitting in the chair.
Q. That must have been scary. Definitely. My parents immediately sprang into action to get me help. There were so many tests for all kinds of things, like mononucleosis, Lyme disease, anxiety, everything. I was put on many medicines, which of course did nothing. Luckily, I saw Dr. Raymond Hubbard at Reading Pediatrics, and he wouldn’t give up on finding out what was happening to me. Eventually we discovered it was POTS.
Q. What were you told about it? Not much. It affects about 500,000 worldwide, so, while it’s more common than people might expect, it doesn’t get the same research and attention as other diseases, so most people have never heard of it. It’s an issue of the autonomic nervous system. There is so much research yet to be done. There’s no cure, and the exact cause isn’t known. There’s suspicion that it could be connected to several other health situations, like pregnancy, concussion or a viral infection. Patients usually don’t know why they have it.
Q. And that lack of information led you to write your book, So Close To Death, Yet So Far Away? Yes. When I was first diagnosed I was young and just wanted to hide it. I didn’t want to talk about it and made excuses for how I was feeling. I finished school and got a good job as a manager of a rental car company for several years, but my health got to be too much. I couldn’t push through the fatigue and collapsed. I had to resign, do therapy and get back on my feet. It was then that I realized I wanted to share my story, to get it out of my system but also to hear from other patients and talk to doctors working on POTS. I wrote the book in about six months. It’s been a great way to meet people, share our experiences and learn more about medical research. Children’s Hospital of Pennsylvania now has a POTS specialist, so work is being done. Hopefully learning the cause and about treatment is in the near future.
Q. You’re an inspiration, so what do you do when you’re not putting all this good into the world? I like being active, so I swim as hydrotherapy and do some traditional exercise. It helps to keep stress levels low. I’m a diehard Philly sports fan, so I try not to miss any Phillies, Eagles or Flyers games. I also read a lot and like to watch documentaries with my girlfriend, Maddie Barditta. I’m even considering working on a documentary about POTS to spread awareness further.
