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Conference On Pots


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Hello everyone,

Just want to let you know that things are being done to improve education on POTS for young physicians. Today I presented a conference on POTS, and the young doctors-in-training asked me questions and seemed very interested to learn. This was a power point presentation, and I had slides about this site and the many activities that are done by this organization. I also discussed many myths about POTS that exist in the medical community, the stereotype of "young women with normal routine workup" and the notion that some physicians think that they "must be anxious, hormonal or stressed." :( The presentation was very well-received and generated a good discussion, both among young physicians and the "older" doctors.

I think physicians who are currently in training will know a lot more about POTS than previous generation of doctors. DINET certainly plays a major role in this trend. Since I discussed this website in my presentaiton, I am positive that some other physicians will visit this site and this forum for their own education.

Hope you guys get to meet these "better educated" doctors soon.

doctorguest

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thanks doctorguest for giving the presentation on pots to the docs .....AWARENESS AWARENESS AWARENESS! You are not only helping docs by giving such a presensation but potentially their future POTS patients. Thanks for doing your job in getting the word out and informing docs, both old and new, of this wacky debilitating illness. MUCH appreciated.

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Thank you so much for helping to educate tomorrow's doctors. I would love to be able to see a doctor and not get looked at as though I have 2 heads when I explain that "I have postural orthostatic tachycardia syndrome".

Even the doctors that do know about POTS don't really seem to understand what it is like to live with POTS or how wide the symptoms can be. Some think that the sinus tachycardia is the only issue - if only, I'm blissfully unaware of my crazy sinus tachy. Trying to get them to understand how it affects more than one body system is difficult.

Even if they just take away a recognition of the name "POTS" and recall that it can cause young female patients to be labled as "crazy", maybe they will consider a tilt test next time they see a polysymptomatic patient with dizziness and fatigue.

Thank you again for spreading the word.

Flop

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Thank you for your presentation,and for your advice on the forum,both are greatly appreciated,Pat

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Huge Kudo and thanks to you, doctorguest!!! Your expertise, generosity, and kindness make you a role model for all docs. I can only hope that future sufferers will experience the compassion and care that they deserve. We are so fortunate to have you advocating for us.

Julie

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thanks so much for helping to educate & spread awareness...if you can't already tell by others' responses, it is very much appreciated!!! and thanks also for letting us know.

i am curious though if the presentation included mention of other types autonomic dysfunctions as well? not in detail necessary but just a mention to the fact that there are other disorders/ dysfunctions "in the family" so to speak?

thanks again for all of your efforts!!!

:unsure: melissa

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WOW!! that is AWESOME!!! thank you so much for being one of the good guys... or girls... in join the fight to raise awareness for us potsy folks.. it thing it wonderful that there are doc like you willing to stand up for this disorder..

and education is the key to moving mountains..

thank you!!! :unsure:

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want to add another thank you, doctorguest!

like melissa, i'm interested to know, whether this was just pots or dysautonomia in general. i always tell people that i have pots, which is a type of dysautonomia, which . . .(etc., etc.). also i'm curious if this was a national or international conference?

thanks again, i'm sure these conferences will make a HUGHE difference for both doctors as well as for us, the patients!!!

corina :)

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Hi everyone,

As always, I am humbled by your appreciation. To answer some of your questions, this was a conference at a major academic institution, where, you would be surprised, many doctors don't know much about POTS.

Melissa and Corina, the presentation focused on POTS only. The reason is that, interestingly enough, I feel that other types of autonomic disorders do get more attention, both in textbooks and clinical practice. POTS, on the other hand, is not given enough attention because it affects "otherwise healthy" young women, so sort of gets brushed off by some as perhaps "nothing serious", which, depending on what you compare it to, may or may not be the case. Regardless of how one views it, patients deserve good medical care and appropriate treatment, as well as greater research interest from the scientists and exploration of better treatment options.

If only pharmaceutical companies would be as interested in investigating drugs for POTS as they are for migraine headache, we would all be in better shape with respect to treatment. OK, I'll get off my soap box now :).

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Doctorguest, I don't think many of us are surprised to hear that so many of these docs. are not familiar with POTS. Thanks again for your support,Pat

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Thank you so much doctorquest! You have no idea how wonderful and appreciated it is to have a doctor who is willing to teach other doctors about POTS. There is so little understanding out there amongst a large majority of medical professionals...so any step to inform others is wonderful. Awareness is the key!

THANK YOU!

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Thanks Doc.

Your efforts are GREATLY APPRECIATED and I say that as a POTS person unable to work full time since 1990..and could only work 3 hrs an evening, 3 x a week with a flex time until 98.

IF ONLY docs could 'understand' the disabling aspects of this. I am VERY lucky with my doc and the CFS specialist I saw before him. Sadly, many are not so fortunate and when I have tried to find a closer doc to see, it was not a pretty site but I just left and never went back.

One doc caught me with his 'at first; SO UNDERSTANDING at first, only to realize he was humoring me then humiliated me--when I said a doc was checking me for a pheo he said " do you have ANY IDEA how rare that IS???) I wish to this day I had TOLD him OFF but he is such a horses rear end (and that's with all respect to the horses I have owned and known) that I just let him go.

I did not give him the power for a second visit. Had he been a regular doc that had changed his tune, I woulda given him the riot act and fired him.

Thank you again for getting what POTS DOES to many of us.

xoxo

Soph

:)

p.s. from what I have read and heard, many docs attitude on ANS and gravity issues STINK.

images.jpg

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I'm very appreciative too. Actually, the WORST appointment I ever had was with an ep cardiologist who said there was nothing wrong with me and that if I were his daughter he'd tell me to stop worrying and go home and have a nice life. Right. GRRRRRRR. Nothing wrong. I WISH!!!

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