Guest Julia59 Posted August 3, 2004 Report Share Posted August 3, 2004 Hi everyone,Please feel free to add any comments of your own if you would like me to take them to our senator next Tuesday. After all, Ohio is a good state to start with---especially since MCO --(Medical College of Ohio) (Dr. Grubb) is here.I wrote the president of MCO on March 30th to no avail. And all the other letters I wrote various media over the last three years have had no response. I had brief response from congresswoman Marcy Kaptur saying she would come to the next National conference on Dysautonomia---then she wished me luck........I'm taking all the letters I wrote along with endless education information on the ANS---and Dysautonomia.I'll be happy to add anything you guy's deem necessary to get through to the medical community.Too bad Britney Spears doesn't have POTS---or someone else famous---then the attention would be there-----------how shallow is that---but true.............Julie :0) Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 3, 2004 Report Share Posted August 3, 2004 Who knows, there may be someone famous with POTS--just never diagnosed.Good luck.Katherine Quote Link to comment Share on other sites More sharing options...
Sue Posted August 3, 2004 Report Share Posted August 3, 2004 HiJust wanted to wish you luck!!Maybe if someone wants to come up with a basic information letter, we could all copy and send out to our own governmental offices. Am sure we would cover alot of states here Sue Quote Link to comment Share on other sites More sharing options...
briarrose Posted August 4, 2004 Report Share Posted August 4, 2004 I was wondering about Joey Harrington (Quarterback) for awhile and his tachycardia condition. He had an ablation though. Quote Link to comment Share on other sites More sharing options...
ethansmom Posted August 4, 2004 Report Share Posted August 4, 2004 Johnny Cash had Shy-Drager syndrome, didn't he? I'm pretty sure he died from something else, but that's the only celebrity I know of that had some form of dysautonomia. Quote Link to comment Share on other sites More sharing options...
briarrose Posted August 5, 2004 Report Share Posted August 5, 2004 I believe he was miss diagnosed with Shy-Drager at one point in his life, but I believe they came back later and said no he did not have shy-drager. Quote Link to comment Share on other sites More sharing options...
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