[Anonymous June 9, 1997 at 11:10 am Post count: 93172]

#1055432

This subject is very important to me. I have my own ideas as to why Graves’ Disease does not get the publicity it should. I’m not going to fill up the whole BB with them, although I could. I have thought about this a lot and for a long time. This very subject is why I decided to put a Graves’ Disease page on the web. I did it hoping that it might help educate the public about the human side of this disease. Best as I can tell, I’ve had active Graves’ Disease about 27 years.

For those who are interested in helping to get the publicity that has been discussed in the last few posts, maybe there is something I can do to help. I have offered, for free, to help write personal pages about people who have this disease. My thinking is that if there are enough stories out there that show the problems we have with this disease are real and not “all in our heads”, and the pages are all linked together so that they can’t be overlooked, (If you find one, you find them all) that is a big step in the right direction. This is the reason why I placed Dianne’s Page first and foremost on my links page. Make it human!

To anyone who reads this post, let me know what you think. If you want a personal page, just let me know.

Sincerely,

Sue Rose
http://www.geocities.com/HotSpring/7944
e-mail: graves_disease@geocities.com

[Anonymous June 9, 1997 at 4:11 pm Post count: 93172]

#1160993

As for GD publicity, “only the squeaky wheel gets the grease.” It seems
like it takes a celebrity to deal with a disease before the media will
stand up and take notice – Gail, Tori, the Bushes can only help our cause.
Then, the big bucks for public awareness and research should come flowing in.
The National Graves’ Disease Foundation needs a celebrity spokesperson or
major publicity coverage on its own – which takes money and time. I agree
with Nancy, one way to increase awareness is to increase the NGDF’s
membership and volunteers. It seems to me that GD is a relatively “new”
disease, meaning that doctors have limited knowledge about it. As research
discovers more, maybe public awareness will increase.

We can do our part by openly talking about our symptoms and treatments
with our friends and family. Sharing our stories on the web, becoming
NGDF members, wearing the GD Tshirts, and making the NGDF our favorite
charity are all ways to get the word out.

Wishing you health and happiness, Debby

P.S. Sue, I tried going to your homepage, but GeoCities says that they
can’t find your file.

[Anonymous June 9, 1997 at 4:27 pm Post count: 93172]

#1160994

When I was having my radiation treatments I made a really neat sign on the computer advising how to get to NGDF on the Internet and also the URL of the support group. I asked if I could put it up in the hospital waiting room. I was told I would have to go through a lot of red tape to get permission. At the time I was feeling so terrible I told the radiologists that “I was sorry because I felt this site could help a lot of people” but I left it at that. When I am feeling better I will find out what that red tape is. I have mentioned this BB and information obtainable to so many people that now many ask when they phone if I am on the net talking to my friends about Graves! I think if we all do our own little bit – it could help a lot. SAS

[Anonymous June 10, 1997 at 7:33 am Post count: 93172]

#1160995

For those who tried to go to “My Personal War With Graves’ Disease” and couldn’t get in, try typing the address instead of copy/paste. I did the copy/paste thing and couldn’t get in either. When I typed it, I got in. Go figure!

http://www.geocities.com/HotSprings/7944

Whatever we do, let’s do something! Support the NGDF, Personal Stories, Web Pages, write to George and Barbara Bush, know of a celebrity (A cute one would be very nice, Nancy! , talk to everyone who will listen, or all of the above. Or something yet to be heard.

We can all do something. When we do something to help ourselves, we feel stronger and a little less helpless. Wouldn’t that be nice?

Thanks,

Sue Rose

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