How many doctors does it take...?

According to Dysautonomia International, the average time to diagnosis for a POTS patient is 5 years and 11 months, and many patients report anecdotally that in that time, they were misdiagnosed or told it was "all in their heads." So that made us wonder how many doctors did you have to see before one recognized that you had POTS?

387 POTS patients answered, with choices ranging from 0 (meaning the first doctor recognized POTS) to 40+. Here is the frequency distribution:

As shown, 17 lucky patients (4.3%) had the first doctor recognize POTS. On average, using the mean, it was the 9th doctor who recognized POTS. Using the median, it was the 6th doctor. However, in the survey, the upper choice limit was 40 doctors, assuming that would be high enough to accommodate all answers. We couldn't imagine more than 40 different doctors being stumped before one recognized POTS. We were wrong, and 9 patients answered 40+. Several patients later told us they had seen 50+. The imposed limit of 40 makes our mean an underestimation.

Hopefully these numbers will decline for new patients. I'm optimistic because organizations like Dysautonomia Information Network, Standing Up to POTS, The Dysautonomia Project (and others) are doing great work to help spread awareness and to educate doctors. In addition, smart phone apps, like The Stand Test for POTS app make it easier for patients to collect relevant information on their own, and to easily give thorough information to any doctor, whether or not they have heard of POTS.

We have lots more findings here, or to receive occasional email updates on new findings, you can sign up on our homepage. Be well!


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