firewatcher Posted April 9, 2011 Report Share Posted April 9, 2011 Patients with rare diseases must advocate for themselvesChicago area Chefs develop recipes for non-profitThe word is getting out... Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted April 9, 2011 Report Share Posted April 9, 2011 Thanks Firewatcher!I still find it odd that this is a "rare" disorder when now 3 other people in my town have been dx's with this! KC Quote Link to comment Share on other sites More sharing options...
Noreen Posted April 9, 2011 Report Share Posted April 9, 2011 Very interestingThanks for posting Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted April 10, 2011 Report Share Posted April 10, 2011 "There is a lot of frustration in not having validation," Raj said.Understatment of the century.Thanks for posting this. Quote Link to comment Share on other sites More sharing options...
rach73 Posted April 10, 2011 Report Share Posted April 10, 2011 Thank you for posting.Two very good articles.Rach Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 11, 2011 Report Share Posted April 11, 2011 That's really great. Definitely question the "rare" characterization too. While not a common or epidemic condition, my specialist has said POTS is not rare, just rarely diagnosed, but hopefully that will change and more people will get help. Quote Link to comment Share on other sites More sharing options...
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