Crow Posted July 13, 2010 Report Share Posted July 13, 2010 http://abcnews.go.com/Health/teen-finds-cu...ory?id=11142991Mother of Teen Finds Cure for Mystery Disease Online...sorry if this has been posted already. Foghead today. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted July 13, 2010 Report Share Posted July 13, 2010 Any press is better than no press, but..........I've had doctors tell me just to relax this will go away on it's own. At least we (past our teen years) did get a paragraph in this article "POTS was first recognized in 1993 and some research has shown an association with chronic fatigue syndrome. It can also strike in middle age, but the prognosis is not as good" I do like how they used DINET as their information source and got the details correct. Thanks for the post Crow. Quote Link to comment Share on other sites More sharing options...
jem15 Posted July 13, 2010 Report Share Posted July 13, 2010 good to know, any press is encouraging! ha, I just get frustrated when they say how most teens get better, since I've been symptomatic since 16, but was just diagnosed at age 31, after getting progressively worse each year. Ha, hoping I'm a late bloomer and still "grow out of it" ;-) Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 13, 2010 Report Share Posted July 13, 2010 Nice. I posted a comment praising ABC for carrying this story. Quote Link to comment Share on other sites More sharing options...
juliegee Posted July 14, 2010 Report Share Posted July 14, 2010 Thanks for sharing, Crow. The story made me weepy. Could have been my son's. He was struck at 12y/o and is 17 now; certainly not all better, but managing with many meds & lifestyle changes. The prognosis seemed a little rosier than reality, but I appreciate ABC's effort to educate & spread the word. Julie Quote Link to comment Share on other sites More sharing options...
iheartcats Posted July 15, 2010 Report Share Posted July 15, 2010 I just tell myself middle-aged is over 40 now. Mine hit in the 20s so I can keep hope alive! Quote Link to comment Share on other sites More sharing options...
dianne.fraser Posted July 15, 2010 Report Share Posted July 15, 2010 Thanks Crow. I agree with Todd - its encouraging that there is any press at all. Here in Australia there are periodic updates on the health of our only famous dysautonomia sufferer, Greg Page (formerly the yellow Wiggle) - not someone with POTS, but some general type of autonomic dysfunction. It all helps to raise awareness among health professionals and in the broader community.Dianne Quote Link to comment Share on other sites More sharing options...
roxie Posted July 15, 2010 Report Share Posted July 15, 2010 Catlady- thanks for saying you still have hope! I have had POTS since I was 12. I'll be 25 soon and annwondering if I've passed the growing out of it phase? Maybe there's still somehope Quote Link to comment Share on other sites More sharing options...
bkweavers Posted July 16, 2010 Report Share Posted July 16, 2010 I agree with Mack's mom that the story was a little too rosy. The girl is very blessed to feel so much better after only a year. I'ts been over 3 years for my daughter now. Still, I'm happy for them and wouldn't wish this illness on anyone.There really needs to be a lot more articles out there on this illness. There are so many different symtoms and degrees of being ill with autonomic dysfunction. My dream some day is to write a book or at least an article with my daughter.Brenda Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 17, 2010 Report Share Posted July 17, 2010 "But the outlook for their recovery is "excellent" in about 80 percent of the cases, he said. "When you get through the teenage years, it resolves. After a year or two or three, they live happily ever after." "YEAH RIGHT..... Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 17, 2010 Report Share Posted July 17, 2010 Thanks for sharing this article with us! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 17, 2010 Report Share Posted July 17, 2010 The story was in response to an article on anxiety and heart disease. I was going to respond and didn't. Now I wish I had so I think we should all contact ABC and and make them aware that we need awareness and just how severe Pots is. There is power is numbers... I gave my email and 2000 word story. Let's all do it. It's at the end of the article and do it to ABC not just a comment.Can't hurt to try...Bellamia~* Quote Link to comment Share on other sites More sharing options...
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