Now that I’ve had a day to think about it, I realize why this comment bothered me so much. This reminded me so much of an experience I had as a highschooler. At a sports physical I checked off that there were times with intense activity that I feel dizzy and near syncope.
https://twitter.com/ahinkle628/status/1560739692517199897
My wonderful pediatrician appropriately referred me to cardiology. The doctor did an EKG, listen to my heart and noted very slight murmur, and cleared me to participate in sports. Oh and of course to make sure that I stayed hydrated and was eating salt.
By the time I saw this cardiologist, I had already had several episodes of syncope, usually related to painful events. I also sprained my ankles multiple times by then. So for 20 years I thought I just needed to drink more water and eat more salt.
But then in May 2021, when I received my #hEDS diagnosis, I realized my syncope, and a constellation of other symptoms I’ve experienced, are related to #dysautonomia. I’m not just a person who doesn’t drink enough water or eat enough salt.
So, hopefully next week I will share my story with this cardiologist and maybe this will help her choose to learn more about dysautonomia and how it’s not just orthostatic intolerance.
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