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NEW! On Twitter? We just started a group there, too at http://twittgroups.com/group/cushings. We also have a new "twibe" at http://twibes.com/cushings
Cushing's Help:
Cushing's and Cancer Blog on CaringBridge- CushingsHelp on ning.com
- Cushing's Help on multiply.com
- Cushing's Help Doctor Board on multiply.com (moving from msn. The msn board will close February 2009). This is a private area. To be invited you must be a member of the message boards and have posted at least 7 times. Contact MaryO for an invitation.
- Cushing's Help on Twitter Groups
- Cushing's Help on Yahoo! Videos
- Cushing's Help Cause on Facebook
- Cushing's Help and Support Group on Facebook
- Cushings Help Organization, Inc. Facebook Fan Page
A means that the owner is a member of the message boards.
- Brook's Cushing's page
Brook's space on myspace.com has Cushing's information and her pictures - Cathy:
- Cushing's Syndrome
This site includes a downloadable chart to keep a record of all your blood tests, abstracts, photos, personalstories and much more.
- D'Shawns Journey to Germany
Shawn lists her Cushing's symptoms in Blog format (Note: watch out for the pop-ups)
- Diane's Radiotherapy journal
On the message boards - you must be a member to read. Diane posts all her experiences with radiotherapy to help others going through the same process or trying to decide if its for them.
- Erella Ganon
Erella had her second transphenoidal surgery in 2004 for a pituitary tumour, in Toronto. The CBC did a one hour documentary about her first surgery. She is wondering about some of her symptoms and whether anyone else had something similar occur.
- FerolV's Blog
Diagnosed with Cushings Disease in 05, after YEARS of mis-diagnosed symptoms, I want to share my experience with others.
- IBOVERW8 SparkPeople page
- Jennye's (surpriseaz2007) MySpace page
I do have a Myspace page that talks about my Cushing's issues. Right now, I have it set to private, but I will gladly add anyone (PM surpriseaz2007 on the message boards). I set it to private after I kept getting a lot of advertisments and weird messages.
- Judy's Cushing's Family Blog
This is a story of one familys' survival through the trials of living with and diagnosing a "rare" disease, one that not many doctors believe exists in the general population. It is a story of fear and mistrust and excruciating sadness for the family.
- Kate:
- Kiri's Adrenal Source Health Issues
- Kristin's Blog
- Lisa C
(Blog) The Cushing's Disease Journey
I've suffered with Cushing's Disease for 20+ years. Soon I should be hearing from the neurosurgeon's office to schedule surgery to remove two pituitary adenomas and a Rathke Cleft Cyst. Now that I am beginning to see the light at the end of the tunnel, I am blogging the end of my journey.
- Lorrie's (LorrieI) MySpace page
- MaryO:
- Melissa:
- Monica:
- Natalie F's webpage, with her pictures
- Nicole's (cocobanana) space on myspace.com with Cushing's discussions
- Robin (staticnrg):
- Robin's Blog
- Robin's Cushing's "Flake
Robin writes: Getting "Flakey" in a geeky way, Research, bookmarks, and general info to share
I've been having a lot of fun "flaking"..... I'm exploring the new Web 2.0 technologies which include wiki's, podcasts, newsfeeds, and flakes.....
I've built a flake for Cushing's to share what info I have with anyone who wants to use it. I'm still working on it and have a lot more to add, but I'll do it as I can. A lot of things I've put there point back to this site, and if it's a link to the boards, only board members will be able to see it.
http://www.pageflakes.com/staticnrg.ashx?
I've put a feed of my bookmarks on the flake site, but I also have another public site for them, too:
The neat thing about all this is you can do this, too, and we can "network", sharing with each other. You can incorporate my stuff in to your flake, and I can incorporate yours. It's a way for us to share info with each other. MaryO may want to put links to all this on here...I don't know. But it's the "new" thang, and predicted to be how things are going.
- Rain's blog, Rain has Cushing's disease, chronic uticaria, bilateral compartment syndrome
- Sarah (samhaaiello)'s space on myspace.com
with Cushing's information
- Victoria: The Largest of All
Victoria's weight gain journey
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