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Reply To: Participaction 2008

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#6051
Atwitsendatwitsend
Member

I think you are very right. We are lucky to have physicians that know to take this seriously. I moved to a new city and have to drive two hours to see my doctor because the doctors here on my ins. plan know nothing about it.

I especially think the HIV link clouds the issue. When I was first told I had it, almost all the research and medical papers I could find focused only on HIV patients. This disease has been known about for a long time. Somehow information about non immunocompromised peopel with it has not gotten out to the medical profession in a big way. I wish hospitals that deal with it such as National Jewish would send out information or put ads in JAMA telling about it so physicians can become better informed. Maybe those who are going to National Jewish or NIH can ask if any kind of wide ranging education is planned or forthcoming for pulmonary and infectious disease specialists. If I hadn’t been referred to a doctor who happened to have a lot of knowledge and experience on this disease I might be dead by now. -Chris