This month Dysautonomia International would like to put the Volunteer Spotlight on Amy Kohut who has been volunteering for Dysautonomia International since our launch in 2012, and recently joined our Board of Directors.
Amy fell ill during her first year of law school and ended up receiving a diagnosis of POTS from Dr. Thomas Ahern of Scripps Health in San Diego in 2008. Amy says, “He saved my life. I had an “old school” Tilt Table Test and let’s just say it wasn’t pretty.” Amy started the California POTSies Facebook group in 2009 to see if anyone else had this syndrome, and sure enough, she found out she was not alone in having POTS.
Amy “met” Lauren Stiles (telephonically) in 2012 while studying for the California Bar Exam. “We spoke on the phone for hours about our respective experiences in obtaining proper diagnoses, law school and life stuff. We both volunteered to give a radio interview about dysautonomia in the early days of Lauren’s non-profit vision, but there were technical issues, and Lauren ended up getting locked out of the interview, so to speak. I had to wing it.”
After Amy’s riveting radio performance, she was appointed as the first Chair of Dysautonomia International’s Patient Advisory Board and represented the organization at the very first medical conference the organization participated in, The 10th International Catecholamine Symposium, in 2012. Amy was invited to lecture before a group of the world’s leading autonomic experts. “I did not know what a catecholamine was at the time, but I did know they could be measured and abnormalities in catecholamines were correlated to different forms of dysautonomia.” Whatever Amy said worked, as several dysautonomia experts in the audience join our Medical Advisory Board after that conference. “We were off and running with a new non-profit and a growing patient and clinical community.”
Dysautonomia International even got Amy interested in football. “I never understood the feeling of joy at the end of any Super Bowl until the Eagles won in February 2018. My husband’s family was rooting for the Eagles because that’s their team. I was rooting for them because then QB Nick Foles’ wife, Tori Foles, had been battling POTS and was helping Dysautonomia International bring international awareness to the condition. I was so excited when they won that game, I had to take an extra beta blocker!”
We asked Amy what she would want to share with the dysautonomia community, and she had a great response that will resonate with a lot of us right now. “We are living in uncertain times right now with a global pandemic that doesn’t seem to discriminate among the sick and the healthy, the rich and the poor, or, the old and the young. As long as the dysautonomia community sticks together, as we have done since the early days of social media, we can support one another in riding out this storm. As always, our patient population puts our faith in the scientists, the researchers, the clinicians and the greater volunteer community. Despite these difficult times, we will continue to bring awareness to all forms of dysautonomia and all known etiologies, continue funding research so that dysautonomia patients do not experience the unbearable diagnostic and treatment delays of the 1990s and early 2000s, and educate the next generation of healthcare providers in autonomic neurology. While we may be in a holding pattern as the world comes together to prevent, test, treat and care for COVID-19 patients and providers, those with dysautonomia know better than most how to cope with uncertainty. We will get through this together, as we have been doing for the last decade as a united and well-informed patient community.”
Thank you Amy for everything you’ve done and everything you continue to do!
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