Acromegaly Support Group

As a member of the Pituitary Foundation forum since last July, when I was first diagnosed, I too was saddened by the sudden closure of the service. It had been invaluable to me at a time when I had no real idea what the disease involved nor how treatable it might be.

Well, the forum saw me through multiple tests (oral glucose tolerance, IGF, MRI, colonoscopy, sleep apnoea study) to my transsphenoidal adenectomy, and a couple of weeks beyond, and I should be grateful for that.

I would hope that as many of those seeking answers to questions about acromegaly may find themselves here at Daily Strength, and that we can prove to be as supportive as the Pituitary Foundation forum was for its predominantly UK-based readership.

Welcome to all who make it here!

John

I am not a member of the pituitary foundation but found myself here on dailystrength and although a very small group although increases I have found such support with a condition that when first diagnozed lets says very mixed emotions and being the only person at my doctors surgery I have found talking and sharing with people who understand such comfort so for people to loose a forum must be so heartbreaking.Although there has been one or two things as with any forum Dailystrength has dealt with the issues but overall I have been with such lovely very kind supportive people and feel like I am part of a family although one or two got to add are slightly crazy oh ROFLMAO and theres one member that really needs to be kept under control no names I hope people do find their way here and the more that want to wipe the smile off the acromonster the better Yah.

a member of the forum too. i did replyto tem about it bt obviously i can not say much. although they have had a good response in finding modertors for the forum posts. i hope that they do use these volunteers to get thefroum going again. a bit upset about it as the link to the acromegaly awareness video was linked from there. the help promtoning the video from them helped so much and i can not thank them enough. fingers crossed they get it back up and running for all the people who need support and advice. i know weget it here too and its such a nce little family we have. thanks jon danzig for everything!

Jon thanks for letting us know....as one of the ealry memebrs of the DS acro group I welcome new members..I htink what sustains us is a resepct and udnerstanding of the agreements when you sign p..I also think that as a group we have helpe deach other understand the roles of this group and the importance of knowing that everyone has a unique journey with acro and must make discions base don what it int ehir lifes at those moments...etc...we have had lively respectful discusion with occasional reminders!!!!

Hi Jon,I was also very puzzled by the sudden closure of the Pit Foundation, and saddened, I Hope it will be up and running soon,they have given me so much help over the last few years, but fortunately I was also a member here, and we have a great bunch of people on the Forum,so sorry for Flouncy, she made a great Video, but maybe they wont be out of action too long.

There’s now a group called "Pituitary Foundation Forum Refugees" on Facebook. Quite a few of the old members of the Pituitary Foundation Forum have joined. I’ve just posted the following message there:

"Just to let you all know that there is a thriving Acromegaly Support Group at DailyStrength.org where we have lively discussions, friendly exchange of information, lots of hugs and no censorship! 'Refugees' from the Pituitary Foundation Forum are warmly welcome.

http://dailystrength.org/c/Acromeg...

Best wishes

JonD (an ex member of the Pituitary Foundation Forum)"

It is a great pity that the Pituitary Foundation Forum has closed. It has been very sudden for the large numbers of people who used the site, many of whom are at very vulnerable times of their lives. I do fear for the lack of support that many of them may feel, as a result. I'm still shocked and at a loss to understand what has happened. For a registered charity to let so many people down so suddenly, was there a major crisis of some sort? We all would understand if this was shared with us properly. However, the Daily Strength is wonderful and I have felt so supported by my international friends. I know everyone will rally around the new contributors.

Yes it is a great shame that they have closed the forum and they have let down so many people as a result.

A forum has been set up by Paul at the address of www.pituitarychat.com/forum

I'm told that the official "launch" will be on Sunday, but people can register prior to that.

My experience with the Pit F is that I approached them with research we found after our son's suicide. There is a systematic review (Schneider 2007) covering over 1300 head injury patients which establishes beyond doubt that a quarter of mod/severe traumatic brain injuries cause pituitary damage. This condition can wreck your sex-life and cause serious depression, and it's treatable with hormone replacement - but the research just hasn't filtered through to the medical world so people are discharged from hospital with undiagnosed pituitary dysfunction. Between 10,000 and 15,000 people are affected annually in this way in the UK. This is a vast number, almost as much as the entire number of hypopituitarism sufferers on the Pit F's books, - so it's a crisis. The Pit F's duty is to lobby the government. Yet the director refused even to write to NICE (the national institute for clinical excellence) whose guideline on head injury omits hypopituitarism completely, to ask for an exceptional update. I thought this very strange, but when I remonstrated, the director stopped replying to my emails and instructed her staff to ignore me too. Considering that I'd actually paid £145 to become a life member, and that I was raising a matter of great public concern, I thought this behaviour was unacceptable. When I wrote to her saying that I was going to raise the matter with the Pit F's medical committee she wrote a very angry unprofessional email accusing me of wasting her time.
I'm now rather interested in the matter of the closed forum. I would like to know what was said that was so 'unacceptable' that the forum had to be shut down. I would also like to understand why the financial affairs of the Pit F appear to be in disarray (as anyone can see on their website if you look at the report and accounts). Does anyone know what can be done if you believe that a charity's CEO is not doing their job properly? There are no contact details supplied with the list of Trustees.

Hi Caroline
I am so sorry to hear about the death of your son.I have just read an article in the salisbury journal by anne bushen who is a trustee of the pituitary foundation,there is a contact number 01722 710890,the article was written in 2008 so I dont know if that number still stands,also there is another support group started by an other member of pituitary foundation called pituitarychat,I am sure that paul clarke who set the new website up after the closure of the foundation would be very interested in talking to you,he will help you in any way he can.