March 03, 2018
This fun run/walk/roll will benefit The Dysautonomia Project which is a 501.c3 not for profit organization whose goal is to raise awareness of Dysautonomia. Dysautonomia involves disorders of the autonomic nervous system, and usually involve abnormal symptoms in many organ systems, including cardiac, gastrointestinal, neurological, and pulmonary, as well as others. Dysautonomia, an invisible illness, may be one of the most misdiagnosed medical conditions of all time. The biggest problem in autonomic medicine today is the lack of knowledge about dysautonomia in communities and especially community based physicians.
Hi! I'm Shelby and I love running! In the spring of 2016, I started to experience exercise intolerance. Soon I could no longer run. After developing many more symptoms, in the fall of 2017, I was diagnosed with POTS. Over those two years, once a month, I would put on my running shoes and try to run. It never worked; after less than a minute, I'd end up with an incredibly high heart rate, totally confused, and laying on the ground.
With my POTS diagnosis, I started to learn about my new body and how to listen to it. I also learned to exercise in a way that fit myself. I made it my goal for 2018 to run one mile. With much joy, I can report I accomplished my goal at the end of January.
This does not mean I am cured, nor does it mean I will always be able to run. It means that one day, I ran. And, that my friends, is absolutely huge in my book. I'm participating in the POTS Pi Day 5K to give back to the dysautonomia community, which has given me so much in such a short time.
The Reason for the Event
"I don't want others to have to struggle to find knowledgeable medical help, the way we did. This event honors not only the memory of my daughter, but also all individuals currently suffering with POTS, EDS and other forms of Dysautonomia. This effort is personal for me. I am blessed beyond measure to be the mother of Christina Tournant, who voluntarily gave up her fight with POTS/Dysautonomia on March 5th, 2015. Christina loved math, so naturally Pi Day (3/14) was her favorite. Since Pi day falls on a Tuesday, we are holding the event the Saturday before (3/10). In high school, Christina won numerous awards, both for athletics and academics. Full of passion for knowledge, Christina was valedictorian of her high school and was accepted at her dream university: The Massachusetts Institute of Technology (MIT), in Cambridge, MA. Throughout these years of achievement, Christina suffered from numerous unusual symptoms and spent MANY hours in the offices of a variety of medical specialists. Christina was finally diagnosed with POTS/Dysautonomia after a friend suggested this as a possibility. Following her diagnosis, we were given misinformation or no information regarding the many symptoms she suffered from or what to expect. Christina was essentially led to believe that she could control this by "thinking positive thoughts." The Dr's did this because they did not know enough about Dysautonomia to be able to educate us, and unfortunately made it seem like it was not a big deal (which was clearly not the case!!).
The AWARENESS and better understanding of Dysautonomia by medical professionals is KEY, and Christina's story exemplifies why it is SO URGENT.
By spreading awareness about Dysautonomia and helping to fund research and treatment centers, I/we hope to help others who are undiagnosed or misdiagnosed, and are suffering. PLEASE help us do this by getting involved in our event. No donation amount is too small."-Tava Wilson Tournant