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POTS • Postural Orthostatic Tachycardia Syndrome

A disorder of the autonomic nervous system; AKA dysautonomia.

An estimated 500,000 to 1 million people in the United States have it.  Most of them young women.  No wonder they call it "the most common condition you've never heard of."

On average, it takes a person with POTS 6 years to be diagnosed.  6 YEARS!!!  It took me 3.

Hi.  LeatherBird, here.  I was recently diagnosed with POTS.  My story is shared by hundreds of thousands of Potsies around the world-- a sudden onset of health problems and bouts of crazy fatigue, followed by a slew of lab results that didn't match how I was feeling.  I was told "everything looks good" and "you're fine" by countless doctors.  I was certainly not fine.

Upon pursuing a diagnosis with clean lab results, many POTS patients are told they have anxiety or just get plain tired of trying.  Let me tell you.  Just because someone looks fine, does not necessarily mean they are fine... or that their pain is in their head.

You see, the first diagnosis of POTS was given in 1993.  In the medical world, that makes POTS pretty young.  Many doctors and specialists aren't familiar with it.  This makes it particularly hard to get diagnosed.  Frustrating is an understatement.

So if you've never heard the term "spoonie" or "invisible illness", type it into your search bar and stay awhile.  There is a huge community of people that just want to be seen.

500,000 to 1,000,000 people need to be seen.

This April, let's #flocktogether for POTS!

For more information about POTS, see Dysautonomia International's site:


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