AnonymousNovember 15, 1996 at 6:42 pmPost count: 93172
I wanted to let you know that we are in the process of trying to change things
a little bit. When we first started the BB we showed all message and it took
forever to load because of the volumn of questions we were getting so we started
to show the last 30 days of postings. This too became very large and we started
showing the lase seven days postings with a note at the top of the page to click
and see the last 30 days of posting. You cann see all the messages by going to
the last message and reading it. At the end of the last message you will see a
link to first message. This is the first message I posted that started this whole
thing back in June of this year.
The message board has changed quite a bit since June as we have grown. Archie and
Annette have said we have between 600 and 1000 hits a day to the support group
message page (not all are Graves hits) for all the support groups listed in the
support-group.com home page. We at the National Graves Disease Foundation did not
anticipate such a hugh response. We try to answer all postings but many of the
postings are very similar. If you go to the NGDF home page (there is a link at the
top of the message board) you will see links to the frequently asked questions for
Graves disease. We are in the process of updating the FAQ list. The NGDF bullitens
are being added to the homepage as well. So is the NDGF application so you will not
need to mail off to us to get what will be on the internet for you to download in
the comfort of your own home.
Archie and Annette are doing this for us free of charge and are doing this in their spare
time and we thank them very much for it. You will see more changes as time goes by and the
NGDF homepage is being redone by Annette to make it easier to see everything and links
will send you to where you need to go. Plese take the time if you are newly diagnosed to
read all the posts. You will see a lot of repeat questions but you will also see answers,
dispair, hope, encouragement but most of all you will see a common thread of understanding
and compassion. Understanding is the key! There are not many folks out there who can
relate to what bothers us, worries us, or how we see OURSELVES. We understand and we can
provide an ear to listen and maybe even provide answers and recommendations. Bruce, Dianne,
Debbie, Rachel, Nancy and myself are all volunteers who try to help out others like us.
Nancy is our Director. I will post more latter. Until then hang in there.
on-line support group
facilitatorAnonymousNovember 16, 1996 at 3:48 pmPost count: 93172
Well it has been a busy week on the old BB. Welcome to all new folks
and hello to all old (?) folks. I have send some of you answers
individually so hopefully I will get all the mail answerd and add comments
to Bruce’s STUFF (thanks Bruce).
I entered a previous post on prisms but here is a brief. Ground prisms are
great. Go for the high index plastic and e-mail me for a frame that is great
of folks with GD.
Secondary glocoma; Some folks have asked if marijuana would help. Belive it
or not I have had a lot of conversations with folks and doctors on this subject.
Survey says!!! NOPE to DOPE. Most people did not experence any relief and in
many cases it agravated their eyes and did not help. Plus secondary munchies
is not a good thing. The eye drops for glocoma have THC in them which is the
active ingredient in POT so use the drops if prescribed and keep away from the
pot. I must admit I thought about it myself thats why I started asking questions.
Radiation and distance: How far to stay away is up to your doctor and the lenght
of time as well. I was told a longer time and distance than most. Use common sense.
And follow your doctors advice.
This is a tougher one. Dentists and GD. Well the jury is out on that one. I have
not been able to find much on the subject other than Ann’s post and what my dentist
told me as well as some folks in my local group. Take it for what it’s worth it can
not be found in writing. My dentist said he would watch my soft tissue and gums now
that I have had radiation. Also said he would hold off any dental work needed until
after the RAI. Look for a future item in the NGDF news letter that is sent
out quarterly. If you are not a member go to the top of the message board and send
in a sase for a application. Applications will be on line soon in the home page.
I will write more latter. I have a wicked sinus infection and the screen is killing
- You must be logged in to reply to this topic.