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Enid

National News!

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Very cool! Thanks for posting. Always good to get more recognition out there for POTS//dysautonomia.

Had to laugh though that the same doctor says "quality of life is very much affected, even to the point that these people can lose their jobs" but then they end the interview with him saying "it's benign". IDK but somehow I don't think of having my entire life changed and career ended as being "benign". :rolleyes:

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Haha, Chaos, excellent point! Benign meaning not life-threatening, I suppose. I love it when people point out that at least I'm not dying. I AM very thankful for that...but kind of prefer my quality of life standard to be higher than "not dead".

Enid, thanks for sharing, exciting coverage!

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Thanks for posting, Enid! It's great to raise awareness.

Chaos - I hear you! It doesn't feel the least bit "benign" when you are living it!

lejones - you made me laugh with your comment "...kind of prefer my quality of life standard to be higher than "not dead" :D Exactly!!!! That's what it amounts to a lot of days...

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Happy it's in the news, but why do they always have to sugar coat it in the end. He started strong but then Benign? Prognosis is good? ... um, I beg to differ. I agree with you guys, just being "not dead" doesn't quite cut it for me. I want to live!

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lejones- LOL Very good! "I'm not dead yet". Maybe we should get dysautonomia awareness t- shirts with this as a sub-title :P (although Monty Python might take exception to it I suppose).

But I agree totally. Yes, it's benign as in not terminal, but sometimes it feels like a kind of living death. It's certainly more of a half-life (or quarter, or eighth depending on the day) than a "real life".

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News doesn't always mean facts. Hopefully those watching did their own research. Ive often thought of going to media. I know of a few in my area with pots.i saw in an old newsletter a map of pots patients. It didn't surprise me that the states with the most patients were states that have autonomic clinics/ docs. We need to get the word out

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