sugartwin Posted October 22, 2011 Report Share Posted October 22, 2011 Right on the heels of the New York Times article, another mention of POTS.http://www.huffingtonpost.com/barbara-hannah-grufferman/postural-orthostatic-tachycardia-syndrome_b_1019879.html Quote Link to comment Share on other sites More sharing options...
brethor9 Posted October 22, 2011 Report Share Posted October 22, 2011 arrgh! again this article makes it sound like POTS only affects teenagers and that it eventually goes away with a little treatment and medication....it sounds so fluffy! I would love to read an article that gets into the down and dirty of how miserable POTS can really be and that it affects people of ALL ages!! that it doesnt go away in the blink of an eye and treatment differs for everyone....there is no cure only symptom management, relapses and remissions.....sorry if I sound annoyed..I have been having a really hard couple of weeks and articles like this I think, can be damaging to getting other medical professionals to understand the impact this disorder has on usBren Quote Link to comment Share on other sites More sharing options...
sugartwin Posted October 22, 2011 Author Report Share Posted October 22, 2011 I wrote a comment saying just that... or rather I tried to calm myself down, and then comment. The "it's not a disease" line really slew me. I mean yes, it's technically a syndrome, but then, so is AIDS It's the same kind of thing as from the NYT article. The diagnosing doctors it seems are the source of these images of POTS as 'less than real.' Which is troubling since doctors like Stewart pioneered so much of the original research if I remember correctly. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 22, 2011 Report Share Posted October 22, 2011 I know, I commented too! Just pisses me off. Yes, lots of teens are afflicted and recoup. I recovered, too. For about 13 years, all I had was the occasional dizzy spell. Because when I first got sick no one knew what it was, just chalked up to me being bad at aerobics. At thirty, it was completely disabling, and eventually led to other diagnoses. Had I found out at 17 about the EDS, I could have perhaps saved myself a great deal of pain now, by taking better care of my body, and my joints, in my twenties. I just find it maddening the way that even when we get press, we STILL get discounted and misunderstood!Sandy Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 22, 2011 Report Share Posted October 22, 2011 On the bright side, at least POTS is getting some attention now. Are any of you writing letters to either paper to explain what POTS is really like? Perhaps suggest an article on adults with the syndrome and interview some people who are older and suffer from it? Maybe if a group of us wrote in.... Quote Link to comment Share on other sites More sharing options...
roxie Posted October 22, 2011 Report Share Posted October 22, 2011 Articles like this make me sadI've had POTS since i was 12. I'm now 26 and even my "good" spurts are no where near growing out of it. I've tried everything the dr's have said to do and I don't get better.I'm like the forgotten teenager?And then I've had a few times where I told people about my illness, they've googled it and found articles like this one and made comments like "on the Internet it says teenagers outgrow it. Why haven't you?" When people say that it hurts my heart and makes me wonder where I went wrong? Or haven't I tried hard enough? Sometimes it's almost like theres a few different illness under an umbrella term. The kind the gets better and the kind that doesnt Quote Link to comment Share on other sites More sharing options...
kclynn Posted October 22, 2011 Report Share Posted October 22, 2011 Maybe you could make a visual. Something like, picture 100 teens with pots, 80% "outgrow" it - that still leaves 20 people left with it. Quote Link to comment Share on other sites More sharing options...
ladyt Posted October 23, 2011 Report Share Posted October 23, 2011 I didn't out grow it in any way. I am glad pots gets mentioned in the press, but wish for more stories of the badly aflicted ones. Like myself i guess.Going togetther as a group and write to "the press" sounds like a good idea.Docs dont get it, the public dont get it.... Quote Link to comment Share on other sites More sharing options...
yogini Posted October 23, 2011 Report Share Posted October 23, 2011 I am not angry. It sounds like a person without a medical background writing about her daughter's personal experience. Many of these articles seem to be about kids who get better. I think people love a story that has a happy ending. It is a start. What we need to do now is get more articles out there that talk about adults and/or people that don't get better... Quote Link to comment Share on other sites More sharing options...
yogini Posted October 23, 2011 Report Share Posted October 23, 2011 It is interesting if you read through the comments - how many people think they or someone they know have POTS after reading this article. It also seems that the person who wrote the article is not very knowledgeable about our condition in general. Oh well! Quote Link to comment Share on other sites More sharing options...
kclynn Posted October 23, 2011 Report Share Posted October 23, 2011 I think it you want an article that accurately reflects your situations then you should write an artitcle and submit it. There are lots of people who have already written their stories on this web site but the news people are not nessasarily going to come here and see them. Progress is being made. I thought the article was pretty good. It is focused on the girls story. I don't think people who don't live this could possibly understand but awareness would the goal. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.