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  • Anonymous
      Post count: 93172

      Maybe I can help to clear some of this up. When one says they have Graves
      disease we tend to include all the other things that go along with it. We
      say the eyes are part of it and SAS you are right in what it says in our
      bulletins. The others are right as well since very recently it has been found
      that Graves eye disease is a seperate disease. There is much more debate on
      the subject than what we are doing on the board. The doctors are trying to
      figure out what to call it. Some want to call it Graves eye disease and some
      want to call it Grave Opthomology (GO). Right now the GO faction seems to be

      It is possible to have the eye involvement without the tyyroid involvement but it
      is rare. Graves thyroid and graves eye disease go hand in hand in about 99% of
      the cases.

      Pretibial maxidemia (a skin disorder where antibodies attack the maxidemia layer
      of skin usually on the shinbone) is also a different disease but goes hand in hand
      with Graves disease. It is possible to have one without the other but is also rare.

      From the first day of this board we have discussed Graves; eyes, skin, the mental aspect
      and all other parts and parcels of graves and its side effects (weight, anxiety, etc).
      We can debate what to call the board but we cover all aspects of the disease. I do hope
      the spokesperson does not tout the one pill a day and all is better line either. I have
      not had the chance to talk to the person yet but Nancy and I will get the chance.

      No offense was taken by the NGDF for someone speaking their mind. We are an educational
      organization and try to educate. That is what we do. Some of our board members are involved
      in research but we do not fund research. We wrk at education and providing support. This support
      is provided to those with Graves disease, those who live with us who have Graves disease and
      those who are looking for information on Graves disease.

      We are not trying to pass the buck and not say something is Graves disease. We are saying
      that it is Graves related and that is why it is under the FAQ and symptioms. Doctor’s and
      others use that information to make a diagnosis. All are treated as part of the disease even if
      they are different antibodies.

      Hope this helped.

      On-line facilitator
      NAtional Graves Disease Foundation

        Post count: 93172

        Hi Jake,

        And here is just a couple of more ways they like to refer to
        the eye disease. They doctor that did my eye radiation
        treatments refered to it as TED, Thyroid Eye Disease.
        Another site I found on the internet called it TAO, Thyroid
        Associated Ophthalmopathy. But who is counting!

        Michele B.

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