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Welcome to the latest Cushing's Newsletter!
Cushing's on Facebook and Twitter
In Memory: Leader of OSU campus ministry dies at 49
Help Keep The Cushing's Sites Going
Endo News: Hypercoagulable State in Cushing’s Syndrome: A Systematic Review
A young writer with much to say
In This Issue
Welcome to the latest Cushing's Newsletter!
Cushing's on Facebook and Twitter
Help Keep The Cushing's Sites Going
Media: Battle goes south of the border
Major Complications of Obesity and Their Causes
Abstract: Two Year Follow-Up Of 32 Nonfunctional Benign Adrenal Incidentalomas
Endo News: Study Provides Documentation That Tumor "Stem-like Cells" Exist In Benign Tumors
Endo News: Hair Analysis Provides a Historical Record of Cortisol Levels in Cushing's Syndrome
Endo News: Grass-roots voices speak up on health care
Endo News: (Adrenal) UHCG surgeons taught rare surgical procedure
Endo News: Mental illness - it's not all in your head
Patients First: Twitter Transcript
Cushing's or Syndrome X?
New and Updated Helpful Doctors
It’s been three weeks since I started on natural supplements to help fine tune my recovery from Cushing’s syndrome. I can honestly say that I feel pretty damn good - not 100% just yet, but I’m getting close.
Here’s a list of the improvements I’ve had since taking the supplements.
* increased energy levels
* longer, more evenly sustained energy levels
* a more restful sleep, no waking up during the night, no tossing & turning
* BIG decrease in appetite
* less cravings for foods high in sugar, fat & salt
* ability to think more clearly
* longer sustained attention span, greater attention to details
* increased libido (I have a sex drive again!)
* noticeable decrease in muscle/joint tenderness
* increase in muscle strength
* noticeable weight loss in my face and torso
* no more hot sweats
Although all of these improvements are exciting, I still have a few residual side-effects that are lingering.
TO continue reading this post, please visit my battle with cushing's syndrome.
I’ve received a number of questions about the types of things my doctor recently tested me for and want to offer more insight to those who are still feeling unbalanced after Cushing’s.I’m 18 months into my recovery and although I’m pathologically cured from Cushing’s, I still haven’t feel well. Something was off and my recovery had totally stalled out. My cortisol, growth hormone & thyroid test all came back normal. I started to have flash backs to before I was diagnosed with Cushing’s and my doctor would say ‘you’re tests came back normal, we can’t find anythig wrong with you.’ No one knows my body than I do and decided that I wouldn’t stop pursuing my recovery until I got the answers I needed.
To continue reading this post, please visit my battle with cushing's.
Welcome to the latest Cushing's Newsletter!
Cushing's on Facebook and Twitter
General Tips: Have an appointment with the doctor? Tips show what to ask
Help Keep The Cushing's Sites Going
Froedtert, medical college open specialty clinic
Pituitary Gland Tumor: Symptoms of Pituitary Adenoma
Guess some endos aren't happy, either! Biopsy of adrenal masses
A bit of humor: You know you're chronically ill when you...
Endo News: Accidental death verdict on 40-year-old mum
Endo News: Crunching the (Sometimes Surprising) Numbers on Hormone-Related Disease
Endo News: Bleaching is alive and well in sunny Jamaica
Endo News: Chemicals and Endocrine Problems
Robin Smith (staticnrg) submitted 'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
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
'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
New and Updated Helpful Doctors
• Stephanie Shaw, M.D. (Round Rock, TX)
• Todd Darmondy, M.D. (Fort Lauderdale, FL)
• Adam Maass, M.D. (Rogers, AR)
• Andrew D. Scrogin, MD, (Macomb, MI) 
New and Updated Helpful Doctors
New and Updated Bios
Please note that new and updated bios submitted after July 7 have not yet been formatted for the site. They are being done in turn and will show up here in the next few days. Add or Update your bio here
Names in parens are user names on the message boards
New Bio July 6, 2009
Shon (Shon) is from El Reno, Oklahoma. Two months before her 31st birthday, she was diagnosed with diabetes. She has many Cushing's symptoms and will test for Cushing's in early August.
New Bio July 2, 2009
Shirley (Shirley) is from Tauranga, New Zealand. She has pituitary surgery in August 2008 after years of illness, weight gain, depression, etc. She is off all meds bus is still tired and sore.
Updated Bio July 2, 2009
Cynthia (cmo) is from San Francisco, CA. She updated her bio in May 2009 after an MRI showed a pituitary tumor. She was finally diagnosed with ACTH Dependent Cyclical Cushing's after all these years of problems. Her Endo is looking at MEN1 also. This bio includes pictures.
New Bio July 1, 2009
Amber (AmberP) is from Martinsburg, West Virginia. Several doctors have told her that she most likely has Cushing's but after testing say she has PCOS. She has taken meds for PCOS and doesn't feel any better so she is still testing for Cushing's. She has has many symptoms for at least 15 years.
New Bio June 29, 2009
Dina (Dina G) is from Newington, Connecticut. She was diagnosed with Cushing's in November 2008 and just had pituitary tumor removed on June 3rd 2009. She is weaning off steroids now.
New Bio June 29, 2009
Melissa (Melissa G) is from Evans, New York. She is not yet diagnosed with Cushing's but has many symptoms. She has an appointment with an endocrinologist on July 29 and she is undergoing more testing.
New Bio June 29, 2009
Angela (AngelaK) is from Howell, Michigan. She had gastric bypass surgery in December 2006. As more symptoms showed up her PCP treated them individually. A recent MRI shows a pituitary tumor and she is consultation with a neurosurgeon at the University of Michigan who only does pituitary operations (2000+).
New Bio June 28, 2009
Aly (Aly H) is from Poughquag, New York. She has been dealing with Cushing's for the past 4 years and has seen at least 10 different doctors. She recently had her Petrosal Sinus Sampling and hopes to have pituitary surgery soon.
New Bio June 27, 2009
Katie is from St Augustine, Florida. She is not yet diagnosed with Cushing's but has many symptoms. her cortisol level is elevated and she is undergoing more testing.
New Bio June 26, 2009
Beth (bounceback01) is from Lexington, Kentucky. She is not yet diagnosed but her endo is pretty sure she has Cushing's and they're discussion treatment options.
New Bio June 24, 2009
Robert (Robert) is from Portland, Oregon. He had pituitary surgery about 18 months ago and his symptoms are returning. He is not happy about starting testing again.
New Bio June 22, 2009
Leah (cushiemom4) is from Goodlettsville, Tennessee. She had adrenal surgery August 8, 2009 and is now pregnant. She was diagnosed partly due to Mystery Diagnosis.
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
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.
This project was started in June 2008 and put on hold due to several "life issues", one of them being the enormous amount of time it takes to apply for non-profit status.
Here are some of the thoughts and ideas that will be in the book when finished, hopefully by December 2009.
MaryO: some people have articles on the website like http://www.cushings-help.com/helpful_hints.htm and these:
Discuss here at http://cushings.invisionzone.com/index.php?showtopic=32996
