[Anonymous February 26, 1998 at 3:06 pm Post count: 93172]

#1051773

Good Morning,
I know of a website you may want to read over to participate in
thyroid research. The address is:http://www.hbdi.org/diabpart.htm
It is based out of Philadelphia, Pa. Also, if you e-mail me I can give you the name
of a well known graves disease eye researcher who is looking for
participants for thyroid eye disease antibodies. All that is involved is having blood
drawn. A little pain, maybe some gain!!

Other than that there seems like there is little research being done.
From personal experience with another auto-immune disease (diabetes- juvenile typeI)
for my whole life of about 30 years you read about all of the advances in medicine with this
because it affects 25 million Americans but they fail to mention that it is
only for the Adult–type 2 onset: has there been more research. In 30 years I really
have not seen that much research and they are a large organization
of supporters out there. The only supporters cashing in are the “BIG BUSINESSES”-
cashing in on products they are making. Your whole, Sugar substitute, soft drin
industry and those diabetic supply companies. They may make your life a little it easier
f you buy into them. From what I have seen as the major improvement
is the way you take your insulin. You use to have to boil your needles to sterilize them.
Now they are disposable. Also they came out with a pen type needle for you to use.
Other than that, this disease is still pretty in its dormancy for type I diabetics.
Most of the new meds are all for type II diabetics and Type I can’t use them.

Sorry, I got carried away. But please look into the HBDI research and maybe if we all stick together
we can make some difference. If not for ourselves but for the next
generation.
Peace, Health and Happiness,
Dee

[Anonymous February 26, 1998 at 3:52 pm Post count: 93172]

#1152455

When alot of the articles read ” professionals don’t know why the
thyroid stimulating antibodies turn around and attack the thyroid” means to me
that there hasn’t been much research or that it is difficult to do and
no one has realized the way it needs to be done.

[Anonymous February 26, 1998 at 4:32 pm Post count: 93172]

#1152456

Tom,

Thanks for the input. Now I get an idea where you are coming from and may
be able to better answer your questions. While in DC last year I had a chance
to meet with Bill Starkweather. Bill is on our board of directors and his
field of expertice is research. Bill’s wife died due to complecations of
Graves (Had a heart attack after a change in meds). He has devoted his life
to find better testing and drugs for GD. Now most of his research is done
overseas. Why overseas you may ask? Because they can do research faster,
cheaper and with less frestictions than the FDA allows for here. As for
research for Graves specificaly?? Any research on autoimmune diseases will
benifit all autoimune diseases. Work being done for diabities, arthritus,
lupis etc. will directly benefit us all. So mayby that is the way to go.
Who knows?? You have angered me once or twice with some of your comments but
what the heck!! I have angered people with mine too. We just need to go to
mutual corners and come out fighting together against Graves Disease.

Hell back in my hyper days I would rip the heads of folks who I even thought
were giveing me a hard time. I haven’t done that for years but the people who
remember me that we still think I am that way. Once I got stable and over the
majority of my eye problems I really mellowed out. Anti-depressents helped
a great deal. Welcome Tom!! and if we anger you or you anger us or we both
anger others we will work it out! I have said before it is hard to know what
is in someones mind when they post since we can not see if they are smiling
at something they posted thinking it funny only to anger others. Done that
myself.

This BB has helped hundreds and hundreds and sometimes when posts “seem” to
be getting out of hand I as facilitator step in and try to get us back on track.
All are welcome here even if it don’t seem that way sometimes. Why not try
to come to our convention in Lexington KY this year and ask the doctors about
research? Sometimes the meetings and discussions with doctors get really
interesting. The convention is going to be in late July early August.
Look forward to seeing as many of us that can make it. Last year we had about
20 of us on the BB go and we had a rip roaring good time

Love to all (yes even you TOM)
Jake

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