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I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
If that’s not your cup of tea, that’s totally fine! But please do respect the space for others who are interested in engaging in this conversation. #Nightingales
Why #Nightingales? Well, Florence Nightingale was a badass. She went away to the Crimean War, got sick, came home, and was never the same. Yet, from her bed (and long before the internet!) she revolutionized healthcare.
https://twitter.com/jenbrea/status/1041615037348147200?s=21
#PWME claim her as their own; so too do people with #FIBRO as well as several other diagnoses. We can never know what she had, but I hope she can be a role model and avatar for all of us trying to understand our bodies and how best to live in them...#Nightingales
...and to navigate and hopefully, reform, a medical system that IS NOT SERVING US. #Nightingales
This may eventually become a regular Twitter “chat” but as I’m in the hospital, bored, and my schedule, unpredictable, I thought I’d start by sharing a series of asynchronous “get to know you” questions you can answer at any time. #Nightingales
To answer, Q1, tweet “A1:” + your answer and use the hashtag #Nightingales
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