I don't really tell many people much about wegener's either. Once soon after my diagnosis at my lung doctor the nurse said a least I don't have an autoimmune disorder. She gave me a weird look when I told her it was.
This past year my neighbor sent out an email that her labs came back and she doesn't have wegener's. I talked to her a few days later and asked her about if it was granulomatosis that she thought she had, I've lived near them for 10 years and never mentioned I had it. Found out her mom had it and passed away in the 70's after battling it for some years. And that's why she was worried she had it with some of her symptoms at the time.
So I see a lot of us are fairly private with our disease but it can be Benifital to open up a little with people in our lives.
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