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Since some women first present with symptoms during pregnancy or after delivery, and since most women see a gyn yearly, it seems like gynecologists would be a very important group of professionals to educate about dysautonomia. If each gyn had a dysautonomia doc that they could refer patients to it could really help everyone (patients and doctors and insurance companies).

Does anyone know how one would go about doing this? Who educates the medical professionals?

I was having symptoms the day after delivery. It took a chain of 10 doctors (gyn->pcp->cardio1->cardio2->ep1->gyn->pcp->cardio3->ep2->endo1->endo2->neuro->diagnosis) to get a diagnosis. I think of all the money, time and frustration that would have been saved if the gyn heard the symptoms and realized it could be pots and referred directly to the dysautonomia doc. It only took a year for me to get a diagnosis...I know a lot of you have dealt with much worse for much longer. I am curious about how many of us have told a gyn about our symptoms in our journeys to find a diag and help and how early in the chain of doctors did we see the gyn.

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Ernie you are right that it should be the medical schools that teach doctors everything, but as we all know from our experiences that many doctors haven't heard of POTS or dysautonomia. I guess that to cover every rare condition that med students would be retirement age before ever graduating?

I think that as patients we can do a lot to spread awareness of dysautonomia. There is a section on the main DINET website where you can enter the name and address of a doctor and have DINET mail them an information leaflet.


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