One of the best things that's happened to me since moving to Boston is making a new best friend, Mary Curran.
While getting to know Mary, I learned that she has a condition called POTS. She's openly shared her story with me, and it made me want to do something to help her and others suffering with this lifelong condition.
Together, Mary and I will run the Brigham and Women's 10k on June 23rd to raise money for POTS research. This will be the longest Mary has run since being diagnosed and told that she would NEVER be able to accomplish such a physical achievement. In 2008, during a clinical trial with a POTS specialist, the doctor wrote in her chart "she is able to walk by willpower alone." Here's hoping that willpower enables her to run the full 10K!... and honestly, me too!
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!).
POTS: 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.