Wegener's G with P

Posted , 3 users are following.

For those of you just now experiencing hearing loss, with GPA, I like to suggest getting Lip Reading Lessons NOW!  There is a possiblity that you will lose ALL your hearing further down the line,  The younger you are, the easier it is to learn lip reading.

I am totally deaf now and have to rely on lip reading and have 

closed captioning on TV, I am glad I had the lessons when I was still young.

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  • Posted

    Hi Marie,

    I’ve been diagnosed for several years now and have had a few rounds of rituximab. Sometimes when its getting near treatment time i feel a crackling and crinkling deep in my ear. Do you remember having that symptom? I love the idea about getting going lip reading! Brilliant.  

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    • Posted

      With severe Tinnitus I hear all sorts of noises, (rushing water, cracking, hammering, etc) never made the connection that it means it is time for another dose of Rituximab...have to watch for that next time.  

      As for lip reading, I always had a hearing loss of sorts, and learned lip reading when I was young, after finding out I have WG, my hearing is now gone completely, and the lip-reading has sure come in handy.

      They say it is hard to teach older folks lip reading, because in order to learn lip reading you have to learn how to speak correctly, (where to position your tongue, lips, and teeth).  Many seniors have a hard time doing this after speaking "their way" for years...

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  • Posted

    Not true, i have seen older people very good at reading lips. This is not the issue, the issue is seeing your doctor about how you can get some hearing back. I believe that anything good and anything bad can happen in this life. Its possible for your hearing to be restored. You just need the right direction and to use the right tools.

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