They Talked About Pots On Good Morning Az

[bttrflyamby1981]

I haven't checked it out yet, but just wanted to let you know.

Amber

[ETOLY]

I found an article on the Good Morning Arizona website that looks like it was based on this video found at:

http://medicaledge.org/2006june-3.html

Could this possibly be what your Nana saw?

Etoly

[futurehope]

Etoly,

Whether or not this video is what was seen, I viewed it and was very excited that POTS has gotten some press.

The only thing I disagree with is how they mentioned that it is usually in young girls and that it usually resolves with time. That was the impression left anyway.

It absolutely does NOT just affect young women. They should have mentioned that. And it may not resolve.

I believe it would have been moe accurate to state these facts.

In any event, I would love to see POTS get more and more "air" time so that more doctors and researchers would get interested in learning more.

[bttrflyamby1981]

Yes, this is what she seen.

I finaly got a chance to look at it. I was glad that they taked about it, but feel that the facts were not all there.

To me I felt they said with diet and exersise you could manage it.....but that doesn't work for me, and I know it doesn't work for alot of us. Just getting out of bed and doing my dishes is work for me. Granted I have had good days, but they don't last long.

I have not been DX yet though so I can't really say anything on it, but I so wanted to call them and tell them it is so much more then what they say it is.

Amber

[Guest dionna]

1 in 100 kids 12 to 20 are plagued with this awful pain!? that is insane! personally i didn't know it was that common and it outrages me even more that nothing can be done. it has actually inspired me more to try to reach out even more than i already try to do. i tell everybody about it. having dysautonomia is hard enough on me being 20 but i can't imagine a 12 year old having it and missing out on his or her childhood and teen years like that. those years were my toughest years and i just couldn't imagine being so sick on top of it.

dionna

[Dawg Tired]

I think that what got me was they implied that only children get it - and then they outgrow it! It was like they ignored a whole section of the population.

And this came from MAYO!!!! Shame on them!

[Guest dionna]

i agree with you about ignoring the rest of us. i want to somehow raise some sort of awareness to them and let them know that others get it and don't "outgrow" it.

[ksibert676]

xxx

[Guest dionna]

Try not to get too bent out of shape regarding the age range this video discussed. This is still new to the ever changing medical community. I'm sure we can all watch the first groundbreaking video on Alzheimer's and the old and new information would differ dramatically. As we all know some of us went years and years without a proper diagnosis. I've been through this all before with another illness and try not to let things like this upset me. What's important is that we've finally been diagnosed. Rather than complain about the misconceptions of the video, take action by implementing an awarenness program to your local community, as well as the medical community. We can start by contacting our local government.

Problem? Let's think of solutions.

i agree with that as well. i wrote to the show and told them that others had pots as well and i told them how it affects the rest of the pots population. who knows... maybe they will do another report that will help raise more awarness and more accurate information about pots. i am also thinking about writing different people in my state and to the federal government to see if there is anything i can do or help so to raise the awarness even more! more and more military people are developing pots as well so maybe that would help some since the country is all about support the troops and iraq stories. i don't know but maybie it would be publicity for it. mtv is about to do a special on iraq stories and one of them has pots so i am sure information will be spread on mtv, straight from someone who suffers. that reaches out to teens. i do agree with searching for solutions instead of things to complain about.

dionna

[Guest Julia59]

Personally, I'm never too happy to see this illness not reported accurately----but i'm glad that something is out there.

I just don't watch it unless I know I'll be encouraged by it---but if others find encouragement, all the power to them. I'm in a place in my life right now in which I avoid certain stresses. What stresses me, might not stress another, and I'm always happy to see any positive news, even if it's not completely accurate.

I'm concerned that it may be misleading regarding how serious this disorder is, and I would like to see more accurate exposure (don't we all) on DYSAUTONOMIA-----all the different forms of it, including the most common ---POTS. It is very sad when a young person is robbed of their most precious years, so on that note, it's good that they will have exposure on POTS, but unfortunately exercise and good eating habits aren't going to make it go away. It might help manage the symptoms better, but it's just not as simple as that.

Julie :0)