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Current Newsletter, March 4, 2010 PDF Print E-mail
Written by MaryO   
Thursday, 04 March 2010 12:11
Cushing's Help Newsletter, March 4, 2010
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Medical: Abstracts and News

Abstracts

Use of the Desmopressin Test in the Differential Diagnosis of Pseudo-Cushing State from Cushing's Disease
Influence of hydrocortisone dosage scheme on health-related quality of life in patients with adrenal insufficiency
Addison's disease presenting with idiopathic intracranial hypertension in a 24-year-old woman: a case report
Cushing Syndrome in the McCune-Albright Syndrome
Measurement of human growth hormone by immunoassays: Current status, unsolved problems and clinical consequences


News Items

(Cushing's Patient) Fine is waived, but why issue a ticket at all?
Removing Tumors Through the Nose


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Cushie News!

A Note from MaryO


Dear , welcome to the latest version of Cushie News!

Tonight! Interview with Danielle (Smilez133), pituitary patient

Danielle started having noticeable Cushing's symptoms when she was 17 (2003.  Her first pituitary surgery was on December 16th, 2009 and she is scheduled to have half of her pituitary gland removed on February 11th, 2010.

Please listen March 4 at 7:30PM eastern Archives will be available after the chat. The call-in number is (646) 200-0162

Next Week!  Debbie, undiagnosed patient

Debbie is not yet diagnosed with Cushing's but has several symptoms and is testing.  She was diagnosed with Graves 15 years ago and has two VERY small nodules one of her adrenal glands. Debbie will be interviewed in the Cushing's Help Podcast Series March 11th.

Please listen March 11 at 7:30PM eastern Archives will be available after the chat. The call-in number is (646) 200-0162

Coming soon! A Cushing's App for the iPod/iPhone.  There's a mockup you can play with at http://bit.ly/91hdQw

Right now it has Podcasts, Cushing's News, Latest Bios, Upcoming Events, Blog, Twitter, NIH Trials, the latest posts on the Message Boards, Helpful Links, New MDs, Johns Hopkins, Mayo Clinic, PubMed, WebMD.

 

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About Us: Meetings, Blogs, Bios and Helpful Doctors

Upcoming Meetings

• UVa Pituitary Days 2010 conference, April 16-17, 2010 in Charlottesville, VA. More info here.

• DC Metro Area Cushie Lunch, April 24 or 25, 2010 in Fredericksburg, VA. More info here.

• Magic Foundation Conference, including Cushing's and Growth Hormone Issues, June 11-13, 2010 in Chicago, IL. More info here.

• Endo 2010 (San Diego, CA) June 19-22, 2010. More info here.

• ENDO 2011 (Boston, MA) June 4 - 7, 2011. More info here.

• Cushie Convention 2011 (Winnipeg, MB, Canada, or St. Louis, MO, USA) November 18, 2011 to November 20, 2011. More info here.

• ENDO 2012 (Houston, TX) June 23 - 26, 2012. More info as it becomes available.

• ENDO 2013 (San Francisco, CA) June 15 - 18, 2013. More info as it becomes available.

• ENDO 2014 (Chicago, IL) June 21 - 24, 2014. More info as it becomes available.

• ENDO 2015 (San Diego, CA) June 20 - 23, 2015. More info as it becomes available.

• ENDO 2016 (Boston, MA) June 4 - 7, 2016. More info as it becomes available.

• Discussions about other upcoming meetings on the message boards: Meetings, events and information.

New/updated doctors

Fiona J Cook, M.D. (Greenville, NC)
Dr Farheen Yousuf (Austin, TX)
Lisa Nachtigall, MD (Boston, MA)
Anthony Heaney, M.D. (Los Angeles, CA)
Marvin Bergsneider, M.D. (Los Angeles, CA)
Richard J. Auchus, M.D., Ph.D., (Dallas, TX)

Cushie bloggers

Our Newest Blogger! Brandon (jediknight36): The Weary Zebra- Cushing's Patient w/o Insurance
My journey to being diagnosed with Cushing's Syndrome and getting treated... with out insurance.

Updated URL: Saberlowe (Saberlowe): Sarah Dumps Cushing's

Follow my journey as I kick this disease to the curb and move on with my life.

New Bio March 2, 2010
Linda (grimsh)
is from Tampa Bay, Florida. She is not yet diagnosed with Cushing's but has several symptoms and is testing. A recent MRI showed a small pituitary tumor.

New Bio February 25, 2010
Debbie
is from North Haven, Connecticut. She is not yet diagnosed with Cushing's but has several symptoms and is testing. She was diagnosed with Graves 15 years ago and has two VERY small nodules one of her adrenal glands. Debbie will be interviewed in the Cushing's Help Podcast Series March 11th. More info here

Updated Bio February 24, 2010
Monic' (monic13)
is from Grandview, Washington. Her Cushing's journey started when she left for college in 2006 at age 19. She went to OHSU to see Dr. Cook, was diagnosed with Cushing's and 3 months later she had pituitary surgery. She was interviewed in the Cushings Help Voice Chat / Podcast series February 4, 2010. Listen to Monic's interview on iTunes or on the podcast page.

New Bio February 20, 2010
Regina (Jeanie)
is from Michigan. She is not yet diagnosed with Cushing's but has several symptoms and is testing.

New Bio February 16, 2010
Bonnie (Bonaroo)
is from Pennsylvania. She was diagnosed with Addison's disease in January 2009.

Updated Bio February 15, 2010
Wen (greydragon)
is from Pennsylvania. She is not yet diagnosed with Cushing's but has several symptoms.

New Bio February 8, 2010
Sandra (Sandra)
is from Hilton Head, South Carolina. She was diagnosed with pituitary Cushing's Disease after over 9 years of symptoms. She is now awaiting surgery at UVA.

New Bio February 8, 2010
Shellie (shellie)
is from Haines City, Florida. She is not yet diagnosed with Cushing's but has been living with symptoms for 5 years. She is testing now.

New Bio February 5, 2010
Nanometer (sarah logic)
is from Arhus, Denmark. She is not yet diagnosed with Cushing's but has many symptoms and is testing now.

Contact Us Contact MaryO
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Robin Smith (staticnrg) submitted 'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0' PDF Print E-mail
Written by MaryO   
Monday, 22 June 2009 10:06

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

 
Upcoming Guest Speakers PDF Print E-mail
Written by MaryO   
Friday, 03 October 2008 00:00

Guest Speakers

Upcoming Guests:

Last Updated ( Friday, 21 November 2008 08:52 )
 
Non-profit Status PDF Print E-mail
Written by MaryO   
Monday, 27 October 2008 13:25

Updated November 29, 2008:

Here's a checklist of what needs to be done.  As items are completed, they will have a strike through them.

We are in Phase II and moving forward.

Last Updated ( Saturday, 29 November 2008 12:32 )
Read more...
 
Cushie Bloggers PDF Print E-mail
Written by MaryO   
Monday, 08 September 2008 10:13

If you have a blog and you're a Cushing's patient, please consider joining Cushie Bloggers.

We have a new "badge" to show on our blogs.
These were made for us by someone who currently wants to remain anonymous.

To get yours, use this image:



If your blog asks you to enter the URL for the image, use this:
http://www.cushings-help.com/blog/cushblogsmall.png



If your blog wants you to upload an image from your desktop, right-click on the image above and choose "save-as". Remember where you saved it to!

In all cases, the URL for the site is http://www.cushings-help.com

If you put one of these badges on your blog, please post about it on the boards so I can add it to the list of Cushie Bloggers (see current list below.

Happy Blogging!

Last Updated ( Monday, 08 September 2008 10:24 )
Read more...
 


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Disclaimer: Cushings Help Organization Inc does not engage in the practice of medicine, dispense medical advice or endorse any specific doctors or medical institutions. It is not a medical authority, and does not claim to have medical knowledge. In all cases, Cushings Help Organization Inc recommends that you consult your own qualified medical personnel regarding any course of treatment or medication and for answers to your specific questions.

Our goal is to provide support for Cushing's patients and families; provide the most current information and news about this rare disease; to help provide education about Cushing's and related diseases / syndromes; and to encourage local and national support meetings.