[Anonymous June 30, 1998 at 5:31 pm Post count: 93172]

#1050412

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
winning.

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.

Jake
On-line facilitator
NAtional Graves Disease Foundation

[Anonymous July 1, 1998 at 2:29 pm Post count: 93172]

#1149192

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.

[Author]

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