[Anonymous December 21, 1997 at 4:43 pm Post count: 93172]

#1052423

Greetings fellow Warriors,

I have been reading the posts and am a bit dismayed. I have been the
facilitator for this board for over a hear and a half now and have seen
this type of post going on before with MEan-Di and all the assorted posts
in response.

Lets take a look at statistics. About 500,000 people in the US have Graves
Disease. They are all in various stages of the disease. Ninty percent of
folks with GD have NO problems once they are diagnosed and treated. That
leaves ten percent of folks who DO have problems. That is the majority of
folks who post on this bb. So when people read our BB they may think that
all we do is complain. We are a small percentage. What you see as complaining
is hope to someone else. They need to know that they are not alone in their
problems. We tell them that it is OK to feel like they do and they are
not going crazy or they need to go see a doctor/ We have saved sight on this
BB. We have saved marriages on this BB. We have saved people from needless
suffering on this BB. We have provided information to folks with GD that they
could not find anywhere else.

Now we then to think that this BB is our own and it is just us reading it.
We are read world wide. I talked to Annette (Our support group provider)
and she said we get 600,000 hits a month. Not all are to our BB but to the
support group site in general. So it may not seem like people are posting
to the various groups but they are reading them and going to the links provided
for information. I have talked to people in the jungles of Africa, to the
capital of China on this BB. It is a source of information to the world.
I have said it before and will say it again. If you do not want your response
seen and read by the world don’t post it.

I just provided information to a doctor in Japan who is going to do a TV show
on our BB. How about that!!! We have been featured on a TV show in Canada
(Not the one SAS was in) where they called Annette and talked to her on the
phone. Annette is rerady to do a show on PBS TV about the group. They are
going to fly her out west somewhere for the taping of the show.

We had a similar problem with posts about seven months ago with a person who
called them selves No Comment and it started the same torrent of e-mail. So
you see this is not new. The difference is No Comment still kept posting and
eventually used their real name. Only No Comment and I know who that person
is and it will stay that way. But the person who was No Comment still posts
and has needed our support and has had some problems related to GD and under-
stands where we are coming from now. Each of us is in different stages of
the disease. Read all you can use what you need and disregard the rest.

Some day I will post success stores from the BB. Better yet if we have had a
positive effect on your life and have saved you some grief in some way send
me an e-mail and I will post some of them. I will give one example right
now. I received a phone call from a lady who was having eye problems related
to GD. The local eye doctor said she had a sty on her eye lid. She explained
what her eyes felt like and such. Now I am not practicing medicine here but
I suggested a second opinion and sent her the names of three doctors in her
area. She went and found out it was cancer of the eye lid. She was told she
was going to lose the eye and had she not came in it would have spread to
her brain. The outcome was she was sent to an excellent doctor and they not
only saved the eye but her sight as well. The doctor said she needed to thank
who ever sent her for a second opinion. Now I am not saying I made the difference.
I am not that big headed. But the BB made the difference. Jan and I really
appreciate the posts from folks who thank us for being here. I have received
some posts that say that they do not think Jan belongs posting as well. Well
this board is for folks with GD AND their families. We do have groups run by
family members who do not have GD and help the families of those who do.

Sorry this post is so long but I had to say what was on my mind. I wish all
of you Happy Holidays. May you have many more and may the spirit of the
Grandfather touch you and make your life happy and worry free.

Love to all of you,

Jake and Jan

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