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What can we do to get the word out on POTS?


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Ok, I am so sick of no one knowing what POTS is, and Doctors treating me like I am crasy, and a nut ball. I can not beleive what I have read over the last 6 months here as DINET. I seems like everyone has gone though the same thing if not worse. What can I do, or what can we do as a hole to get the word out. I have sent the brochers to all the Doctors I have had, but theres got to be more I can do. Back when I thought it was just my heart, the doctors here got me involed in the walk for AHA. I rasied money easy though there web site, to help fight Hear Disease. I know thats a good fight, but the week of the heart walk, there was so much in the paper about heart Disease, and it was cover by all 4 news stations. The thing is everytime somone heres about it it makes it easy for people ti understand the disease.

Now we a fighting POTS. Yes we are not going to die becasue of it, but many days I find I wish I was as the pain of going though it alone, the pain, and fight just to get up everyday, and face it only to think whats going to hit me today, but hoping today is the day I get a few good hours. Mean while most people don't understand. I just wish there was more I could do. I am stuck at home most of the time, but there got to be somthing to do to help get the word out.

I am not sure how you all feel, but I know it would be nice if more doctors, had more understanding, it would be nice if more people had understanding.......

Sorry for going on and on. I just wanted to know if anyone has any ideas.......


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I am like you. I would like to have the word out so that everyone knows about POTS.

Today I went to the local health services and they told me that they would instruct all the personnel involved with my care about my disorder. That's a start becacuse 6 months ago they were saying that I was making myself faint to get attention.

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Guest Belinda

You know I was thinking of this too..I was thinking of asking my parentsa for some financial help to get something going or to start calling t.v. stations/discovery/local news to do a health segment on it of course/

also I have been giving out the pamphlets to docs. left and right telling them please don't ever let someone be misdiagnosed as I was and made to be crazy...GGGRRRRR.

People need to start realizing that thisdisorder is REAL!!!!

I think I am going to write a book...or try! I have had a very oddball life adopted a nd left in hospital as baby/found my birth family all by myself/Severly abusive ex-husband and now POTS. Sometimes I think I was destined to write about my life and maybe that is why I was blessed with {POTS..ahhh I don't know but I agree with you we need to get this out and so that people will listen/especially all the docs.

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