Monday, June 29, 2009

Monday, June 22, 2009

Finally caught up! 1 updated and 5 new Cushing's bios added. dx include 2 adrenal, 3 pituitary, 1 undiagnosed http://ping.fm/m1tM6
Cushing's locations updated, 5 new people added. http://ping.fm/6Lrv8
5 new Cushing's bios added. dx include 2 adrenal, 1 pituitary and 2 undiagnosed http://ping.fm/SAVCX

Sunday, June 21, 2009

Saturday, June 20, 2009

Our own Robin Submitted this Abstract

Robin (staticnrg) submitted an abstract to Medicine 2.0.  Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.

This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).

An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.

This year's conference will be held in Toronto, Canada and will be attended by

  • Academics (health professionals, social scientists, computer scientists, engineers)
  • Software and Web 2.0 application developers
  • Consultants, vendors, venture capitalists, business leaders, CIOs
  • End-users (health professionals, consumers, payors)

 

Robin's abstract was submitted and accepted!  WooHoo!

'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'

An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.

Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.

Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.

The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.

From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.

One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.

On the Message Boards

Friday, June 19, 2009

Lynn's archived interview is now on iTunes at cushings and at http://ping.fm/MOWlA
Interview includes discussion about pituitary, adrenal, thyroid, adrenal crisis, Dr. Friedman and more.

Thursday, June 18, 2009

Great interview with Lynn! Discussed pituitary, adrenal, thyroid, Dr. F. Archive available NOW at http://ping.fm/QBMKY Tomorrow on iTunes
Great interview w/ Lynn! Discussed pituitary, adrenal, thyroid, Dr. F. Archive soon @ http://ping.fm/QBMKY & iTunes
Interview with Lynn in 20 minutes (7:30ET) CushingsHelp at http://ping.fm/CosFD Call-In number for questions/comments: (646) 200-0162

Cushing's Blog Alerts, June 18, 2009

Living with Cushing's Disease: Not the way I thought the ...
By StacyLeigh
She had 2 in mind, one had more experience with Cushing's patients than the other but she assured me that they were both great. Dr Chik told me to continue taking my medication as I had before and that she would be in touch.... and with ...
Living with Cushing's Disease - http://stacyjourney.blogspot.com/

 

Steve's Weight Loss Seminar | Cooking For All Ages
By admin
June 17th, 2009 at 11:22 am. YOu don't need excess calories in every situtaion ot become obese. Cushing's Syndrome can make you very obese with absolutely zero excess calories. Of course Cushing's Syndrome is very rare. ...
Cooking For All Ages - http://cooking.ixltrainingbooks.com/

Sunday, June 14, 2009

Cushing's Blog Alert, June 14, 2009

Cushing's Family
By judycolby
Tonight Jess said that maybe there are hormones off and it's like being pregnant and having morning sickness. Could be something to that. There does seem to be a lot of similarities between Cushing's and pregnancy. ...
Cushing's Family - http://judcol.blogspot.com/

Wednesday, June 10, 2009

Pituitary Patient Education Day

YOU’RE INVITED!!

What: Seattle Pituitary Center Patient Education Day

Who: Patients, families and friends and anyone else who want to learn more about pituitary disorders

When: Friday, July 10, 2009

Time: 9:00 – 4:30 p.m. (registration opens at 8:15 a.m.)

Where: Swedish Cherry Hill Campus, Education and Conference Center

Cost: No charge; Continental breakfast and lunch will be provided.

Hear from patients who will share their personal experiences living with a pituitary disorder, and chat with other patients and families in breakout discussion sessions.

Agenda topics include:

· Overview of pituitary disorders

· Overview of acromegaly

· Psychological aspects of living with a pituitary disease

· Pituitary hormone replacement

· Cushing’s syndrome

· Surgical and radiation treatment options for pituitary tumors

RSVP: Register online or call 206-386-2502.

Cushing's Blog Alert, June 10, 2009

Sagacious babe plumps for esteem
Brisbane Times - Brisbane,Queensland,Australia
My saggy boobs and stretch marks are from Cushing's disease, a disease that makes your ... I had surgery to fix Cushing's, and had a stroke five days later. ...

Tuesday, June 9, 2009

RT @JohnsHopkins: NIH is leading way toward important medical discoveries to improve people's health & save lives: http://ping.fm/ixVVK

Monday, June 8, 2009

Cushing's Blog Post, June 8, 2009

Cushing's Moxie: Melissa's Battle with Cushing's Disease: I LOVE ...
By Cushie Melissa
Raising a baby while having Cushing's has been rough on Jonathan and me. I do as much as I can, but he picks up the slack, after working his 40+ hours. He has been wonderful to Elena and me. Through this experience, we have grown closer ...
Cushing's Moxie: Melissa's Battle... - http://cushingsmoxie.blogspot.com/