I first met Mary during my official college visit. She was one of the girls on the volleyball team, but when I visited she was sitting on the sidelines. She was struggling with a number of medical issues – she couldn’t stand for long without passing out, she was wearing compression socks to help the blood flow in her legs and she was prescribed a full junk food diet to try to help her gain weight. I saw Mary from time to time for the next year. She would come to tournaments or games that were close to her hometown. She had left school on medical leave and was trying to find answers for the problems she was facing. A year passed and we heard she was coming back to school. Mary moved in with us and the rest is history!
I learned a lot about Mary’s condition over the next few years. I learned she had been diagnosed with POTS and that it was something she would live with forever. I could probably go on for hours, but I will just say this. Over the years Mary overcame every single obstacle in her path. She never ever gave up and because of her perseverance and sheer refusal to accept being defined by her diagnosis she has progressed so much. She keeps moving forward. She inspires me every single day and this race is just another obstacle that Mary will overcome. It’s the longest she’s run since being diagnosed (and the longest I’ve EVER run). My husband and I are flying to Boston to run and to raise money for POTS research. We hope to help others like Mary understand the condition and find progress towards a more normal life.
During my freshman year of college my whole world was turned upside down. On the first day of our spring volleyball workout, 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 starting middle hitter to unable to walk on my own. Appointment after appointment, doctors were stumped, and while all of the tests continued to come back negative, what the doctors could see was that my blood pressure was inexplicably dropping 40 points when I would rise from lying down to sitting or standing. 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. Weeks later we were en route to Toledo, Ohio, where I was diagnosed 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 explain it was that my body always thought I was lying down, which is why standing up made me dizzy, and my heart race, and my blood pressure drop. He told me that I would have POTS forever, and that while I'd never run a marathon or climb a mountain, that he would help me live as close to a normal life as possible.
Fast forward 10 years (& so much progress)...
After trips to Cleveland Clinic, Mayo Clinic, University of Chicago, University of Toledo, GW, and on, I'm doing really well managing this condition, and am lucky enough to work at one of the leading academic medical centers in the country, where a neurologist named Dr. Peter Novak is spearheading research on innovative treatments for the many symptoms that come with POTS and autonomic dysfunction (not least of which is the neuropathy, or numbing/tingling in your extremities). Last week, I decided that I would start a team and raise money for his research.
For those who have seen me in the past six weeks or so, it might seem ironic that I'm making this decision during one of the harder seasons of POTS. But for me, signing up for this race represents the delicate dance of life with a chronic illness, and how important it is to hang onto that hope (and set big goals!).
More about the BAA 10K:
On Sunday, June 23, hundreds of teammates will come together to run the 2019 Boston Athletic Association’s (B.A.A.) 10K® road race to support Brigham and Women’s Hospital (BWH) and Brigham and Women’s Faulkner Hospital (BWFH ). BWH and BWFH care 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