Does anyone know about a charity for CVID, or would be interested in starting one?
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Hello everyone. I will quickly tell my story since this is my first post. I was diagnosed with CVID in 1980, when I was 23. I was giving blood, and I am A+. They discovered I had no Anti B, which I should. This led to the diagnosis. It wasn't until later I started to get pneumonia, in the later 1980s. Got it every few years, then every year. Every doctor I went to get all excited...
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I had to have a lung biopsy, and I have cancer. A very rare form that doesn't have any standard treatment. There just isn't a lot of case history for this. It is epithelioid hemangio endothelioma. The cancer support group doesn't talk every day. I can understand why. I'm waiting for the oncologist to call back for an appointment, and will hear in the next few days. Who knew. Ha!
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