Monday, September 14, 2009

RT @accarmichael: Awesome Amy Tenderich talk: pts use networks for information, emotional support, advocacy.Also decision support! #txfm09

Sunday, September 13, 2009

Who helped you learn Twitter? Tweet their @username & add #TwitterHelper http://j.mp/15OPg0 - @staticnrg convinced me to try it.
RT staticnrg: Growth Hormone for Survival: It's not always controversial http://ping.fm/ITjla

Saturday, September 12, 2009

RT @MollyDugganLLC: Womens Health: Calendar of Events Date: September 2009 October 2009 Novemb http://bit.ly/6qUA2 Full http://bit.ly/Vvj5h
Did you know you could *listen* to Cushing's posts at http://ping.fm/KgbKT ? Info is read aloud at the click of a button!
Several studies have suggested that the prevalence of Cushing's syndrome is higher than previously thought. http://ow.ly/p6iZ
Cushing's locations page updated, 4 new people added. http://ow.ly/p6cE
4 new and updated Cushing's bios added. dx include 2 pituitary, 1 undiagnosed, 1 steroid-induced http://ow.ly/p69G
Have you found www.cushings-help.com website? Also, message/support boards there? http://ping.fm/3I9Bl

Thursday, September 10, 2009

11 new Cushing's symptoms photos added September 10, 2009 http://ow.ly/oUUc
I've had the petrosal sinus sampling and lots on the message boards have! http://ow.ly/oUTn
Petrosal sinus sampling? Lots have! RT stillenuf: Anyone had the cavernous & p? where they go in both sides of groin.. to determine cushings
Please join us! RT @staticnrg: @cushingsfriend Have you discovered http://ping.fm/aQlsY I hope you'll join us there.

Wednesday, September 9, 2009

England: Support for pituitary sufferers

FOR most people diagnosed with pituitary disorders, the condition is initially something of a mystery.

Symptoms develop over time and may go unnoticed for a number of years.

Helping to unravel the medical mysteries are specialist nurses Sondra Gorick and Kathy Powell, whose work in the Clinical Investigation Unit at NNUH is key to diagnosing and monitoring pituitary disorders.

Now Sondra and Kathy are re-launching a local support group for pituitary patients sponsored by the Pituitary Foundation, a national charity, and helped by Tony Denton, a volunteer at NNUH who is also a patient.

"The pituitary is like the conductor of the orchestra - it controls all the other glands in the body such as the thyroid, adrenal glands, ovaries and testes," Sondra explains.

"A large part of our work is to reassure patients who suffer symptoms that can be extremely distressing. For instance, acromegaly is a rare condition that affects the growth hormones, causing the patients' features to grow out of all proportion. Once the hormones are controlled, either with drugs or surgery, the appearance can return to normal.

"It's thought that Goliath had this condition - in the bible story he was a giant and David was able to sneak up on him because in acromegaly the peripheral vision is also affected."

Another condition is Cushing's Disease, which is a tumour of the pituitary which makes the adrenal glands produce too much natural steroids. This is a very distressing condition because the patients put on large amounts of weight particularly around their middles. They get very weak muscles, bruise very easily, often develop diabetes and high blood pressure and several other problems.

Most tumours on the pituitary turn out to be benign and some may not require any treatment at all. However, tests and treatments have improved a great deal in recent years and patients can now look forward to longer, healthier lives with much greater control of their symptoms."

The first meeting of the relaunched support group for pituitary patients will take place 16th September in Benjamin Gooch Hall within the Teaching Centre at NNUH, from 7 pm. It's hoped that the group will meet on a three-monthly basis.

Sondra - who was recently nominated for a "Patient Choice" award in the 2009 Norfolk and Norwich University Hospital Staff Awards - is pledging her support for the Pituitary Foundation by holding a sponsored "green hair day" at NNUH on her 50th birthday, 24 November.

If you would like to know more about the Norwich pituitary support group, call Sondra Gorick or Kathy Powell on 01603 286360 or Tony Denton on 01953 605534

From http://www.greatyarmouthmercury.co.uk/content/yarmouthmercury/news/story.aspx?brand=GYMOnline&category=news&tBrand=GYMonline&tCategory=news&itemid=NOED09%20Sep%202009%2009%3A54%3A07%3A840

Saturday, September 5, 2009

@cushingsfriend I hope so, too! I think he'd learn a lot and meet others. That's the best, meeting others in same boat.

Thursday, September 3, 2009

Johns Hopkins First Annual Pituitary Tumor Center Patient Education Day

Saturday, September 26, 2009

9:30 a.m. Registration

10:30 a.m. Presentations

12:00 p.m. Lunch

1:00 p.m. Breakout session with physicians

Johns Hopkins Mt. Washington Conference Center

5801 Smith Avenue

Baltimore, MD 21209

Please R.S.V.P. by September 4, 2009

Joe Bondura (410) 516-6234 or jbondur1@jbmi.edu

Reservations will be taken on a first-come, first-serve basis.

Please reserve early.

One patient, one Guest

Please indicate any special access and/or dietary needs when making your reservation.

Wednesday, September 2, 2009

6 new Cushing's bios added. 1 adrenal, 4 pituitary, 1 undiagnosed http://ping.fm/Ivul8
6 new Cushie locations added. http://ow.ly/nOgk

Cushing’s Blog Alerts, September 2, 2009

Dear Me... ~ Should Have Seen It...
By Steve
***The author, Steven Owens, suffered from Cushing's Disease for a number of years. Years of testing led to brain surgery at MD Anderson Cancer Center, which failed, leading to a complete removal of adrenal glands 20 months later. ...
Should Have Seen It... - http://www.shouldhaveseenit.com/

 

Daily Improvements: Listening...
By Catherine Hughes
He sent me for an EEG (all normal) to check that my heart wasn't at the root of my fainting/dizzy spells and he also ran a random cortisol blood test which may or may not prove useful as regards a Cushing's diagnosis. ...
Daily Improvements - http://dailyimprovements.blogspot.com/

Lots of us with Cushing's! RT DupontDan: Why do the docs on house always think the patient has cushings...? Does anyone actually get those?