I’m training to run a 10K to raise money for the little-known disease that upended my life a decade ago. For those of you who don't know the history, my world was turned upside down (quite literally) during my freshman year of college. On the first day of spring training for volleyball, I stood up from the bench press and couldn't see straight. Over the next few months, my health continued to deteriorate, until I fainted in April and left on medical leave. From November to April I had gone from a Division 1 athlete to unable to walk on my own.
My wide-ranging symptoms perplexed a long list of specialists, most notably the fact my blood pressure dropped 40 points when I went from lying down to standing, but everything they tested for came back negative. In 2008 the internet wasn't quite what it is today, but my mom spent hours scouring blogs, and found an entry that sounded a lot like my symptoms. Ten months and 50+ appointments after my symptoms began, we were en route to Toledo, Ohio, where Dr. Blair Grubb diagnosed me with POTS-- postural orthostatic tachycardia syndrome.
Dr. Grubb explained that my autonomic nervous system wasn't functioning the way it should, and that the easiest way to describe it was that my body always thought I was lying down. Thus, the mere activity of sitting or standing up put strain on my body, causing me to be dizzy, for my heart to race, and my blood pressure to drop. He told me that I would have POTS forever, and that while I'd never run a marathon or climb a mountain, he would help me live as close to a normal life as possible.
Fast forward 12 years (& so much progress)...
I'm working towards (repeating) the biggest athletic accomplishment since getting diagnosed: running a 10K!
After trips to the Cleveland Clinic, the Mayo Clinic, the University of Chicago, the University of Toledo, George Washington University, and more, seeking better ways to manage POTS, I am doing well and have the condition largely under control. Now, I'm lucky enough to work at one of the leading academic medical centers in the country, Brigham & Women's Hospital, where a neurologist named Dr. Peter Novak is spearheading research on innovative treatments for the many symptoms that come with POTS and autonomic dysfunction. Last March, I decided that I would start a team for the 10K and raise money for his research. Our team raised over $10,000 to support Dr. Novak's research, and I hope to run it again and raise even more this year!
While I still deal with symptoms on a daily basis to varying degrees (like fatigue, numbness, heart palpitations, and digestive issues), I am so fortunate to be as healthy as I am. The 10 months between the onset of symptoms and my diagnosis were some of the hardest and scariest of my life and I hope to shorten that journey for the countless POTS patients across the country—especially those who don’t have the access to care and other advantages I had. With this race, I’m hoping to play even a small part in supporting research that will help improve their quality of life after the diagnosis.
In 2008, during a clinical trial with a POTS specialist, he wrote in my chart, "she is able to walk by dint of willpower alone". Here's hoping that willpower enables me to run the full 10K! I'm so grateful for your support, whether you choose to do that financially or by spreading the word or cheering us on!
More about the BAA 10K:
On Sunday, June 21, hundreds of teammates will come together to run the 2020 Boston Athletic Association’s (B.A.A.) 10K® road race to the Brigham. The Brigham cares for patients across New England, throughout the United States, and from 120 countries around the world. Every day, our clinicians, researchers, and caregivers work to find new ways to predict, prevent, and treat the most challenging diseases of our time while delivering world-class care with a profoundly human touch. Our B.A.A. 10K teams are proud to fuel quality patient care, innovative training, and life-changing discoveries that will benefit patients here in Boston and around the world.
More about POTS:
POTS is estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,000,000 to 3,000,000 Americans. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.