AnonymousAugust 7, 1998 at 3:08 pmPost count: 93172
Notes on the conference:
We got there late and missed the cardiologist so cannot say much about that.
We did get to hear the Endocrinologist, eye doctor and the Laugh doctor. What
I really liked about the endo was the fact that he said different people feel
better at different levels of TSH and T3/T4. I have told many people that in my
support group and have had many doctor’s tell me that they try to keep people in
the middle of the range even if the person is not felling well at that range.
The endo said if your doctor does not want to partner with you on how you feel and
listen to you “FIND A NEW ONE” Well said and well received!!! Not to much new on
the endo front other than some research going on for DNA testing to determine what
gene causes Graves and if that gene is different in people with Graves and Graves
eye disease. I know that opened a can of worms last time Jan or I said it but the
endo talked about it as did the eye doc.
The eye doctor covered different surgeries for Graves eye disease. He also stated
that about 20% of people they see with Graves eye disease do not have Graves disease.
It is a separate eye disease and as stated before they are looking for a different name
for it to show that it is not dependent on having Graves disease to have eye involvement.
The remaining 80% of people they see have Graves disease and Graves eye disease too.
The eye involvement is a different disease but is used as a diagnosis for Graves since
they are so closely related. Same thing as Pretibial Mexidemia, It is Graves related
and people with Graves get it much more than the general population but you do not have
to have Graves to get Pretibial Mexidemia. It is used as a diagnostic tool to lead to
the diagnosis of Graves. Over all he did a great job of explaining the relationships
between Graves Disease and the eye involvement.
The laugh doctor was really great. I have always maintained that a sense of humor is
essential in fighting this disease. He told how five minutes of laughter can cause up to
three hours of pain free sleep. It has the same effect of taking a major pain killer in
releasing the natural pain blockers in our systems. Thirty minutes of laughter a day will
improve your life. He said a good five minute laugh is the same as working out for five
minutes on a treadmill or stairmaster. Minute for minute it is the same aerobic workout
for the heart. So if you hurt to much to jog, walk, ride a bike, etc,, rent a funny movie
it will give you a work out and you can get the benefits of exercise without the running,
biking etc if you cannot do that.
We also had two breakout periods one for folks with Graves and one for families. It was really
great but not sure how much to say about that here. We followed the support group rules of saying
what was on your mind and it not getting back to anyone else. In other words what we said there
stayed there. They will probably release an edited version of the tapes for the general lecture
but not the sharing after.
Each of the tapes are available for $22.00 from the NGDF. I hope to update the website to show
the tapes and their costs soon. We had a professional company come in and do the filming and the
question and answer periods. I am buying each of them for viewing at my local support group meetings.
Until later Warriors,
On-line FacilitatorAnonymousAugust 8, 1998 at 5:55 pmPost count: 93172
Thank you for sharing your notes with us:)
I am going to make it a point to go next year!
In the way of research did they give any time frame of when any reports would be available or is it still in the new research stages?
Thank you for sharing!
DeeAnonymousAugust 8, 1998 at 6:03 pmPost count: 93172
Interesting to read about the statisticial data about Graves Patients. Any chance of getting notes in print form??? Thanks
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