Monday, June 29, 2009

6 new Cushing's bios added. dx include 1 adrenal, 3 pituitary, 2 undiagnosed http://ping.fm/dOAV2
Cushing's locations page updated, 6 new people added. http://ping.fm/zscY3

Wednesday, June 24, 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 2.0Medicine 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/

Sunday, June 7, 2009

Cushing's Blog Posts, June 7, 2009

Cushing's Moxie: Melissa's Battle with Cushing's Disease: A LETTER ...
By Cushie Melissa
Although I have made many transitions in the past few years (career to no career, single to married, 1st home to 2nd home, childless to mother, healthy to sick), I have really struggled with one aspect of Cushing's disease. ...
Cushing's Moxie: Melissa's Battle... - http://cushingsmoxie.blogspot.com/

 

Cushing's Moxie: Melissa's Battle with Cushing's Disease: A Letter ...
By Cushie Melissa
The best I could do is to include a letter from Kate, a dear friend who has Cushing's, advocates for Cushing's awareness and has been a wonderful leader for all of us Cushies. She had the courage to capture a different side of the ...
Cushing's Moxie: Melissa's Battle... - http://cushingsmoxie.blogspot.com/

 

Cushing's Support Group Meetup Uptown Espresso & Bakery
This group is for patients and survivors of Cushing's and is a place where patients can partner up with survivors of Cushing's to gain an inside perspective ...

Saturday, June 6, 2009

Cushing's Blog Posts, June 6, 2009

Theodore Friedman - Good Hormone Health - DoctorFinders.com
He gave an interview on the clinical symptoms and signs of Cushing's disease, including weight gain and body reshaping. Theodore C. Friedman, MD, PhD specializes in treating patients with adrenal, pituitary, thyroid, ...
DoctorFinders Latest Members - http://doctorfinders.com/

And Sharm's TV appearance again:

Misdiagnosis of Cushing's Blamed on Fat « Big Liberty
By bigliberty
I'm not sure if anyone in the Fatosphere has brought this up before, but I was watching episodes of TLC's Mystery Diagnosis for the first time, and came across an episode where a woman with Cushings is ignored for years, because one of ...
Big Liberty - http://biglibertyblog.com/

Friday, June 5, 2009

Cushing's Blog Post, June 5, 2009

Simple Diabetic Diet - I had Cushing's syndrome (high cortisol ...
By Simple Diabetic Diet
I had Cushing's syndrome (high cortisol levels) and now my symptoms seem to be diabetic? [info] simplediabetic: June 5th, 8:04. (My Original Blog Post: http://ping.fm/JIAuv). I read that high levels of cortisol can damage the pancreas ...
Simple Diabetic Diet - http://simplediabetic.livejournal.com/

Thursday, June 4, 2009

Cushing's Blog Alert, June 4, 2009

It's Official... High Insulin - Low Carb Friends
By Maryposa
My CO2 is low which, if I DO have high cortisol (the symptoms match up the most of all concerns) together that would indicate Cushing's syndrome? My previous doctor said he was worried that I have that but some preliminary result was ...
Low Carb Friends - http://www.lowcarbfriends.com/bbs/

Wednesday, June 3, 2009

Tuesday, June 2, 2009

Cushing's Newsletter June 2, 2009

In This Issue

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Upcoming Cushing's Book

Cushing's on Facebook and Twitter

Media: Free Online Book: Management Of Pituitary Tumors

Want to Volunteer?

Help Keep The Cushing's Sites Going

Endo News: Pituitary Tumors

Endo News: Neurosurgery Update ~ Minimally Invasive Brain Tumor Removal

Endo News: Bilateral Adrenalectomy for Refractory Cushing Disease: A Safe and Definitive Therapy

Endo News: Deletereous Effects of Glucocorticoid Replacement on Bone in Women after Long-Term Remission of Cushing's Syndrome

Endo News: Predisposing Factors for Adrenal Insufficiency

Endo News: Outcome of transsphenoidal surgery for Cushing's disease: A high remission rate in ACTH-secreting macroadenomas

Endo News: New institute will study rare diseases

Endo News: Hypercoagulable state in Cushing's syndrome: a systematic review.

Endo News: Pituitary-thyroid feedback in a patient with a sporadic activating TSH-R mutation: implication that thyroid-secreted factors other than thyroid hormones contribute to serum TSH levels.

Endo News: (Cushing's and Adrenal Cancer) Hope dies last

Share Your Cushing's Symptoms on a New Site

What can I do about my stretch marks?

New and Updated Helpful Doctors
Todd Darmondy, M.D. (Fort Lauderdale, FL)
Adam Maass, M.D. (Rogers, AR)
Andrew D. Scrogin, MD, (Macomb, MI)
updatedDaniel Kelly, MD (Santa Monica, CA)
Wisconsin (2 new doctors)


Leamington Spa, UK
Toronto, Canada
Melbourne, Victoria, Australia
Hamburg, Germany
Lucknow, India

New and Updated Helpful Doctors

New and Updated Bios
New Bio June 1, 2009
Jessa (Jessa)
is from Bathurst, St. John, Canada. She is not yet diagnosed with Cushing's but has many sumptoms. Her cortisol level is now at 4200. She is waiting for a catscan to check for a pituitary tumor.
New Bio May 31, 2009
Lory (Lor)
is from Minnesota. She was diagnosed with pituitary Cushing's in May of 2009. She had symptoms for two years.
New Bio May 29, 2009
Lynn (Lynn)
is from Bend (OR). Lynn had a left adrenalectomy in 2000. In 2004 Lynn had a Thyroidectomy due to tumor which was malignant on the biopsy, yet benign at surgery. In May 2009 she learned she had a 3mm anterior pituitary tumor. She is a patient of Dr Ted Friedman. Lynn will be a guest in a Live Interview in the Cushings Help Voice Chat / Podcast series.
Updated Bio May 29, 2009
Cynthia (cmo)
is from San Francisco, CA. She updated her bio in May 2009 after an MRi showed a pituitary tumor. She has an inferior sinus sampling set up for early June to see if the tumor is really there and is the cause of all these years of problems. Her Endo is looking at MEN1 also. This bio includes pictures.
New Bio May 29, 2009
Fiona
is from Lydford, UK. She was first diagnosed in 1990 after a year of tests and years of symptoms. About 3 or 4 years ago her symptoms started returning. It appears that she has a recurrence after 18 years.
New Bio May 27, 2009
Naira (nairav323)
is from Montebello, California. She has just been diagnosed with PCOS and is waiting to find out if she has Cushing's.
New Bio May 27, 2009
Evin (Evin)
is from Twin Falls, Idaho. She recently saw a rheumatologist who things she has Cushing's from an adrenal gland tumor. She has many Cushing's symptoms and is trying some self help therapies.
New Bio May 22, 2009
Cindy
is from New Port Richey, Florida. She was first diagnosed with Cushing's disease in January 2002. She had a recurrence and second transphenoidal surgery in February 2006. She has another recurrence and is thinking about a BLA.
New Bio May 21, 2009
Dee (DeeO)
is from Australia. Her daughter has a prolactinoma and Dee is wondering if she could have Cushing's.
New Bio May 21, 2009
Dara (Arkham69)
is from Limerick, Ireland. She is recently diagnosed with Cushing's and also has fibromyalgia.

New and Updated Bios

New Cushing's Newsletter http://ping.fm/OmxHu
New Cushing's undiagnosed bio added. http://ping.fm/PQhCe
Cushing's locations page updated, new people added. http://ping.fm/eznGC

Monday, June 1, 2009

Cushing's locations page updated, new people added. http://ping.fm/OQuhA
2 new Cushing's bios added. 1 adrenal (now also pituitary, 1 pituitary at http://ping.fm/OO6cX