Transform silence into science for Dysautonomia and POTS
Join the DysautoKNOWmia Movement and turn NO into KNOWledge
Transform silence into science for Dysautonomia and POTS
Transform silence into science for Dysautonomia and POTS
Transform silence into science for Dysautonomia and POTS
The DysautoKNOWmia Movement is a teen-led effort to transform the uncertainty and frustration of living with POTS and other forms of Dysautonomia into knowledge, research, and hope. By empowering others to share stories, raise awareness, and support scientific discovery, we aim to shorten diagnostic journeys, improve care, and fuel meaningful change. We believe every voice helps - and that together, we can turn "no" into "knowledge".
At 14, Sophia was diagnosed with POTS after months of unexplained symptoms and frustration. Like so many others, she faced more questions than answers - and realized how many patients feel dismissed or misunderstood. The DysautoKNOWmia Movement was born from her determination to turn personal struggle into shared knowledge, research, and real change.
Life with POTS is a paradox - one moment you're on the floor, unable to stand, and the next, you're breaking records, acing tests, or achieving something extraordinary. While living a life with POTS is a reality for me, I also refuse to let it define my limits. After a visit to the ER and passing out over the finish line at a track meet in the same month, I was determined to make a difference for others. So many teens are getting POTS and have to go through the same series of unknowns, mis-diagnoses, and lack of understanding from others around them. My goal by launching this movement is to empower you to share your story, educate yourself and others around you, and help improve the journey for all the patients who need help.
Chicago, IL
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