Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Very questionable Website! Unbelievable! Pro-RAI, Pro-Big Pharma, Pro-Ignorant!
http://www.gdatf.org/forum/topic/43097/
I just found this website and posted a very short and sweet intro and a link to Elaine Moore - Which got DELETED! They'll probably kick me out so here it is.
This is what I wrote:
For all of us that are like sponges for knowledge and just want to know more about our disease. This has been a godsend to me. She has graves' too and has had RAI. Lots of articles, books, and a Q&A! Us helping each other to learn all we can :)
www.elaine-moore.com
They deleted Elaine's link and posted this response to me:
Hello and welcome!
The GDATF is a public 501(3) charity, and we have some specific guidelines on links being posted on this board. You can check them out on the New User? Read This First! thread in the announcements section of the forum.
Certainly, there are lots of knowledgeable patient advocates out there, but our Board of Directors prefers to only share information that comes directly from peer-reviewed publications or from established medical organizations.
Obviously, this approach has pros and cons. It's possible we could be late to the party if a new therapy comes out, while we wait to see if it's been thoroughly tested. But we also don't want to share any information on alternative therapies or other issues until the medical community is confident that it is both safe and effective.
Kimberly
GDATF Forum Facilitator
through nature's inflexible grace, I'm learning to live
Dream Theater
My response:
Wow! I am new here, so firstly, thank-you for welcoming me. I'm sorry you deleted the link I provided. I just figured the more information for all of us, the better. Personally, that website that I posted had a ton of amazing information, information that has helped me tremendously and I just thought I would pay-it-forward in the hopes that I could help out another that might be suffering, like I. I meant no harm by posting the link. To all that have found themselves here or on any other graves' website, god-speed through this terrible disease.
Wow, Wow, Wow!!!
http://www.gdatf.org/forum/topic/43097/
I just found this website and posted a very short and sweet intro and a link to Elaine Moore - Which got DELETED! They'll probably kick me out so here it is.
This is what I wrote:
For all of us that are like sponges for knowledge and just want to know more about our disease. This has been a godsend to me. She has graves' too and has had RAI. Lots of articles, books, and a Q&A! Us helping each other to learn all we can :)
www.elaine-moore.com
They deleted Elaine's link and posted this response to me:
Hello and welcome!
The GDATF is a public 501(3) charity, and we have some specific guidelines on links being posted on this board. You can check them out on the New User? Read This First! thread in the announcements section of the forum.
Certainly, there are lots of knowledgeable patient advocates out there, but our Board of Directors prefers to only share information that comes directly from peer-reviewed publications or from established medical organizations.
Obviously, this approach has pros and cons. It's possible we could be late to the party if a new therapy comes out, while we wait to see if it's been thoroughly tested. But we also don't want to share any information on alternative therapies or other issues until the medical community is confident that it is both safe and effective.
Kimberly
GDATF Forum Facilitator
through nature's inflexible grace, I'm learning to live
Dream Theater
My response:
Wow! I am new here, so firstly, thank-you for welcoming me. I'm sorry you deleted the link I provided. I just figured the more information for all of us, the better. Personally, that website that I posted had a ton of amazing information, information that has helped me tremendously and I just thought I would pay-it-forward in the hopes that I could help out another that might be suffering, like I. I meant no harm by posting the link. To all that have found themselves here or on any other graves' website, god-speed through this terrible disease.
Wow, Wow, Wow!!!
At the other thyroid board I moderate at, we know not to go over to gdatf.org. In the years past they have kicked many people out and the people come over to our board wondering what they had said wrong. Come to find out that only acceptable info and certain views are allowed to be posted.
I am so sorry this happened to you. :-(
{{{hugs}}}