I will be running in a 10K fund-raising event on June 23 in support of a doctor who treats POTS patients at Brigham and Women's Hospital in Boston (where Mary is the Assistant Director of Development for the Department of Medicine). I would appreciate your support.
Below is Mary's summary of her courageous and ongoing POTS experience.
Mary Curran wrote -
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 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. 10 months after my symptoms began, 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). This March, I decided that I would start a team for the 10K and raise money for his research.
While I still deal with symptoms on a daily basis to varying degrees (like fatigue, numbness, heart palpitations, and brain fog), I am so fortunate to be as healthy as I am. The 10 months between my onset of symptoms and my official 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 and play even a small part in supporting research that will help improve their quality of life after the diagnosis.
I'm so grateful for your support, whether you choose to do that financially or by spreading the word or cheering us on!
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!
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