Thursday, September 10, 2009

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?

Monday, August 31, 2009

Cushing’s Support Group in Sydney Australia

 

Cushing's support group in Sydney « An adventure in Cushing's and ...
By jennnigan
Cushing's support group in Sydney. I'm starting a support group for Cushies in Sydney. I'm “borrowing” the format from my book club – we'll meet once a month over coffee and have a chat about anything, but the topics are likely to be ...
An adventure in Cushing's and stroke - http://blog.slight-hiccup.com/

Friday, August 28, 2009

For sure! RT @sandyboone: Great workshop on Photoshop CS4 - learning a lot.

Tuesday, August 25, 2009

2 new and updated Cushing's bios added. dx include 1 adrenal, 1 pituitary http://ow.ly/lkWr
Cushing's locations page updated, 2 new people added. http://ow.ly/lkO0
6 new and updated Cushing's bios added. dx include 1 pituitary, 5 undiagnosed http://ow.ly/lhtq
Cushing's locations page updated, 5 new people added. http://ow.ly/lgLD

Monday, August 24, 2009

Cushing's Blog Posts, August 24, 2009

Who benefits from private health insurance? « An adventure in ...
By jennnigan
Jen Li is a geographer who was diagnosed with Cushing's Disease last October, and had a stroke five days after surgery to remove a pituitary tumour. She has spent more time than she wanted to in the health system as a patient, ...
An adventure in Cushing's and stroke - http://blog.slight-hiccup.com/

Saturday, August 22, 2009

@staticnrg The spam message is gone from my dashboard - maybe it's been marked ok?
@staticnrg I know - it's still marked as spam. I don't know when it will get released. :( Thanks for trying!

Wednesday, August 19, 2009

Cushing's Blog Posts

Cushing's Family
By judycolby
Last night I met a gal from the Cushing's support board. Her 16 yo son is having surgery tomorrow. It's always nice to meet people from the boards. In fact I have met four this trip. I'm not sure if I've mentioned that I met Steph & her ...
Cushing's Family - http://judcol.blogspot.com/

 

Fat or Cushing's Syndrome?: Am I in Charge of my Diagnosis?
By Lisa
I feel like I have been trying to PROVE that I have Cushings Syndrome or something other than I have just gotten huge and disgusting... I wonder if I have heard nothing about the results then it must mean that I am fine. ...
Fat or Cushing's Syndrome? - http://fatorcushings.blogspot.com/

Saturday, August 15, 2009

3 new Cushing's bios added. dx include 1 pituitary, 2 undiagnosed http://ow.ly/k9uq