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My main family and where I grew up and all my drs are in Kansas Ed Moderator: You live in Guam sometimes... Rochelle: No, we live where he works at that time, sort of like the military but he works for the FAA. Rochelle: I have to be honest, as I have started the CVO, I believe there are more of us out there than they realize and also REALLY believe because of lack of medical education and public knowledge, that there are many undiagnosed, so I don't think numbers are accurate. I think there is no good estimate of the number of patients, because the disease is not recognized in many cases Ed Moderator: So let's talk about your onset of symptoms. Through lab tests, my doctor found a positive ANA which showed I had autoimmune issues. I mean in they have a connection to temp sensitivity? I cannot swim in a pool without getting dizzy and start to have breathing issues. Rochelle: Yes, I am on the Vasculitis Foundation Board with Ed, Dr Eric Dr. But that doesn't necessarily mean it's Cryo, right? … continue reading »