Lauren talks about her long diagnostic process, misdiagnoses, diagnostic delay, and gives us a crash course on just what dysautonomia is. She is the president of Dysautonomia International, a nonprofit she started in 2012, which has gone on to raise considerable funds for research in a neglected field, and hosts an annual patient-centered conference that doesn’t follow any rules. We talk about that research and the conference, and how exciting it is to get in a room with 400 other people who get it, don’t think you’re crazy, and might even share their Gatorade with you.
Lauren lives with Sjogren’s Syndrome and dysautonomia that includes POTS, Inappropriate Sinus Tachycardia, and Neurocardiogenic Syncope.
Links
For more information about dysautonomia and Dysautonomia International see:
DysautonomiaInternational.org
More info on Sjogren’s: https://www.sjogrens.org/home/about-sjogrens
IOM Report on Diagnostic Delay: http://iom.nationalacademies.org/reports/2015/improving-diagnosis-in-healthcare/~/media/Files/Report%20Files/2015/Improving-Diagnosis/DiagnosticError_ReportBrief.pdf
National Institutes of Health: http://health.nih.gov/index.aspx
PubMed: http://www.ncbi.nlm.nih.gov/pubmed
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