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  • Anonymous
    Participant
    Post count: 93172

    I think it is a wonderful idea to provide some way for people to discuss new ideas on treatments, medications, procedures etc. in reference to Grave’s disease. Sometimes the best new ideas and innovations arise when people think “outside the lines”!! So the saying goes – “Ignorance is bliss”; If you are unaware of information then you are unable to ask questions. Support and education are great, but sometimes it seems too much time is spent discussing how terrible we feel, instead of how to take an active roll in making our lives better in spite of Grave’s. I for one love reading about “alternative” ideas for treatment.

    Anonymous
    Participant
    Post count: 93172

    I have been reading this BB for over 2 years and, if possible,
    would like to see it broken up into three categories:

    – Current proven treatments and helpful tips
    – Leading edge unproved treatments and studies
    – Support

    When I first had the eye disease, I wanted to find
    out as much as I could, as fast as I could, to make
    knowledgeable decisions about my treatment. Current
    proven treatments and tips was all I wanted.

    But now I am more interested in studies and possible
    new treatments/cures. I would not have wanted
    this type of information when I first got the eye
    disease as I was confused enough with the current
    treatments and tips.

    I have not posted much in the “support” area and
    tend to skip these types of posts. But I know “support” is
    very important to many of the posters and these types
    of posts have been helpful to me at times.

    Remember, this is just a suggestion from one person.
    I do not know the effort involved or what others may want.

    Anonymous
    Participant
    Post count: 93172

    Hi Dave G
    Can you e-mail at ‘cavalier’. I am interested in research for TED, with attendant causes, treatments, and outcome. In short, *anything*.
    Thanks very much.
    Hazel

    ps
    I quite like the way the BB is set up but I can see your pont of view. I get ‘bug-eyed’ when looking at computer stuff too long, and three boards would not be a good idea for me. Sometimes, someone asks a question and the thread leads to something else which may be pertinenent, and for me that would mean popping back and forth for different topics. Oh well, .. hope to hear from you soon about the first part. Thanks

    Anonymous
    Participant
    Post count: 93172

    We have looked at it in the past and are still looking at it. Problem is this BB is one of many BBs on support-group.com We are all linked in one way or another. We cannot break out just ours (at least not yet). But is is in the future to do so.

    Keep the suggestions coming. That is how I update the web page. If you are looking for specific info check out our links page. We add new stuff from readers all the time and check out many that do not make it to our links.

    Jake
    on-line facilitator

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