What is Acromegaly
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). ...
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Today at 9am the online Forum of the UK’s Pituitary Foundation Forum closed. Some thought, wishfully, that it might just be an April Fools’ Joke. Alas not. The Forum closed for somewhat secretive and obscure reasons and no one knows if it will open again.
The Trustees of the Pituitary Foundation charity wrote to all 1,273 users of the Forum: “In recent weeks there has been a spate of the kind of activity which could offend, upset or mislead users of the forum. To protect them, and to avoid the risk that this behaviour might bring the charity into disrepute, the Trustees have decided to withdraw the service to allow them to consider its future.” No other reasons were given for suddenly shutting the service, leaving members puzzling over what truly might have happened. It’s clear that many will miss the Forum, which provided a lifeline, mutual support and caring friendship for hundreds of pituitary patients. May I warmly welcome those members to DailyStrength.org, especially to our acromegaly support group here? I feel sure we can offer our fellow patients from the Pituitary Foundation Forum an excellent outlet for their comments, feedback, stories and questions. Most importantly, we can offer ongoing friendship, hugs, mutual support and invaluable shared information. At DailyStrength.org I have never known censorship to take place, although I feel sure that if ever offensive, upsetting or misleading comments were posted here, the actual posting or author would be dealt with, without having to close the entire site. I can imagine how terribly upset the patients of the Pituitary Foundation Forum must be feeling today for finding out that they have ALL been ‘banned,’ without a proper explanation and without having done anything wrong. Long live DailyStrength.org! -Jon Posted on 04/01/09, 12:04 pm |
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PS The research link I sent Mish was Hypothalamopituitary Dysfunction Following Traumatic Brain Injury and Aneurysmal Subarachnoid Hemorrhage: A Systematic Review, Schneider et al, JAMA 2007
Review of 19 studies covering 1137 patients. Pooled prevalence 27.5% for TBI, 47% for SAH. http://jama.ama-assn.org/cgi/conte... Other people on DS may be interested to read this. 
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My email in case anyone wants to get in touch with me about head injury and pituitary disease is joannalane@blueyonder.co.uk
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Hi Caroline:
Sorry for the delay in getting back to you, I was out of town for our long weekend. I see that I have a message from you, but I guess it did not go through. Please feel free to email me: michelezentil@mac.com This will be an easier way for us to communicate. I am very interested in the topic of pituitary dysfunction due to head injuries. I have a story about my friend's daughter I can share with you, as well as my own story. Take care, Mish
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Hi there.
It seems a real shame that the Pituitary Foundation forum has closed its doors. I have been diagnosed with Acromegaly last week and am struggling to come to terms with it and learn as much about it as I can. It would have been useful to have this resource available but I am glad to have found my way here. It is uplifting to read the stories of people experiencing Acromegaly - lets face it, its not as if the condition is common or mainstream so any help online should be encouraged and supported. All the best to you all x
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Welcome, Rosie. We here and on pituitarychat (UK/Ireland based) do our best to share info with fellow acromegalics.
I was diagnosed last year (2008), and the Pituitary Foundation forum was a wonderful resource which suddenly closed two weeks after my surgery. I am eight months out of surgery now, and a lot, lot better, though not 'cured' as such, and moving on to lanreotide to see to the remaining small amount of tumour left. I was back to work five weeks after surgery, and if surgery is an option for you, I would recommend it wholeheartedly. For those without other complications, it really is the best chance at beating the disease. John
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I haven't been on at all this month, but I want to chime in here regarding brain injury. I had a bad fall from a horse about 18 years ago, resulting in a sprained wrist and what our local pathetic hospital said was a mild concussion. I happened to be wearing a new ASCI approved equestrian safety helmet, thank goodness, or I might not be here at all. My daughter said I stopped breathing for a bit, then started up spontaneously, so I am suspicious that the "mild" was more indicative of the ER incompetence than of my condition. I went back and got the records from that fall recently. I was seriously confused and disoriented
when I got to the hospital, tenderness noted over right temple, confusion gradually cleared and I was sent home. I've wondered if that fall was related to the tumor.
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