Wednesday, July 8, 2009

Current Cushing's Newsletter, July 8, 2009

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Upcoming Cushing's Book

Cushing's on Facebook and Twitter

General Tips: Have an appointment with the doctor? Tips show what to ask

Want to Volunteer?

Help Keep The Cushing's Sites Going

Cushing's Disease: Carol Perkins' Pet Project: Home bound with a devastating illness, former fashion model Carol Perkins started designing accessories for dogs and discovered a new career

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 2.0Medicine 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

'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)
updatedDaniel Kelly, MD (Santa Monica, CA)

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

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
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.

New and Updated Bios

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