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Current Newsletter, February 4, 2010 PDF Print E-mail
Written by MaryO   
Sunday, 07 February 2010 13:09
Cushing's Help Newsletter, February 4, 2010
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Abstracts and News

Use of the Desmopressin Test in the Differential Diagnosis of Pseudo-Cushing State from Cushing's Disease
Delayed Remission after Transsphenoidal Surgery in Patients with Cushing's Disease
Cushing's syndrome due to ACTH-independent macronodular adrenal hyperplasia
Cushing's syndrome in pregnancy
Multiple Endocrine Neoplasia (MEN) Syndrome-2B With Ectopic Cushing Syndrome
Mortality in Patients with Pituitary Disease
Causes of secondary and tertiary adrenal insufficiency in adults
The Diagnosis and Differential Diagnosis of Cushing’s Syndrome and Pseudo-Cushing’s States
Management of Cushing's Syndrome due to Ectopic Adrenocorticotropin Secretion with 1,Ortho-1, Para'-Dichloro-Diphenyl-Dichloro-Ethane: Findings in 23 Patients from a Single Center
(Pheochromocytoma) Adrenal Venous Sampling for Catecholamines: A Normal Value Study
(Pituitary) Doctors remove Otsego teen’s tumor via his nose
Previous hypercortisolism exposure associated with Cushing’s disease increased risk for metabolic, vascular disorders
Concomitant laparoscopic urological procedures: Does it contribute to morbidity?
Development of a Disease-Specific Quality of Life Questionnaire in Addison's Disease
Psychosomatic aspects of Cushing’s syndrome
Tumor Volume of Growth Hormone-Secreting Pituitary Adenomas during Treatment with Pegvisomant: A Prospective Multicenter Study
Diagnosis and Treatment of Adrenal Tumors: A Single-Center Experience with 238 Cases
Ultrasound-assisted Microsurgery for Cushing's Disease
Epidemiology of adrenal crisis in chronic adrenal insufficiency – the need for new prevention strategies
Diagnosis, management and therapeutic outcome in prepubertal Cushing’s disease
Effectiveness of cabergoline in monotherapy and combined with ketoconazole in the management of Cushing’s disease
Diagnosis of Adrenal Insufficiency Using the GHRP-6 Test: Comparison with the Insulin Tolerance Test in Patients with Hypothalamic-Pituitary-Adrenal Disease

Devizes father runs to say thank you
Elvis, steroid-induced Cushing's?
Corcept Therapeutics Announces Four Anticipated Milestones for 2010
Cushing’s syndrome as a cause of secondary obesity and metabolic syndrome: a case report
Novartis seeks to expand cancer drug portfolio
Cushing's syndrome associated with an islet-cell tumour of the pancreas in a boy aged 2 years.
Glucocorticoid treatment additionally affected bone mass in women treated for Cushing’s syndrome
AACE Issues New Medical Guidelines For Proper And Ethical Use Of Growth Hormone
Diagnosis Of Multiple Endocrine Neoplasia Type 1 In A Patient With Back Pain; Case Report And Review Of Literature
Medical treatment of Cushing's disease: Overview and recent findings
(Pituitary) 'Car nut' turns into a creative surgeon
Rare disorder explains JFK's health woes
Practice Makes Perfect With Brain Surgery Simulator
Saint John's Health Center Appoints Internationally Recognized Neurosurgeon
Adrenocorticotropic hormone, cortisol values predicted recurrence of Cushing’s disease in children
Follow-up of a case of adrenocortical carcinoma
Study Provides Documentation That Tumor "Stem-like Cells" Exist In Benign Tumors
Hair Analysis Provides a Historical Record of Cortisol Levels in Cushing's Syndrome
Specificity of screening tests for Cushing's syndrome in an overweight and obese population
(Adrenal) UHCG surgeons taught rare surgical procedure
Froedtert, medical college open specialty clinic
Crunching the (Sometimes Surprising) Numbers on Hormone-Related Disease
Chemicals and Endocrine Problems
Endocrine Society Announces 2009 Laureate Award Winners

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Cushie News!

A Note from MaryO


Welcome to the latest version of Cushie News! This newsletter will be a little longer than future ones because it contains all the news from the beginning of the year.

Tonight! Interview with Monic', February 4, 2010, 7:30PM eastern. Monic's 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.

Read Monic's bio at here

Interview with Sarah (saberlowe), February 25, 2010, 7:30PM eastern. Sarah has been sick for 9 years before her diagnosis in October 2009. She had pituitary surgery to remove 4mm x 5mm adenoma in November 2009. Her symptoms at onset were: rapid uncontrollable weight gain (50 lbs in a few months), huge purple stretchmarks on abdomen, inner thighs and breasts, GI problems, day time exhaustion, night time insomnia, fast heart rate, facial flushing, think skin and easy bruising, eustachian tube dysfunction, chronic episcleritis, dry cracked skin especially in fingertips, chronic thirst. Additional symptoms over the years: more weight gain, stretchmarks everywhere, hump, nausea, frequent urination, muscle weakness, muscle soreness, hair loss, headaches, very high blood pressure, dizziness.

Potentially New, still in the works: 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 the podcasts, upcoming events, latest bios, newest doctors, Cushings Tweets, blog and news/abstracts.

Possible other features might be a timeline of photos to show your doctor and a checklist which could be exported to excel and other spreadsheets.

NEW!  Occasional Newsletters are Back: Members of this site will automatically receive these occasional newsletters. Of course, you may opt-out at any time. Thank you for your interest.  Non-members may subscribe through the Newsletter Subscription module on the left side of this page.

Modify your Subscription

New! Cushie Toolbar: Be the first to know! The Cushie Toolbar features a Google search box, the 911 Adrenal Crisis! page, the Cushie Reads book recommendations page, Cushie Calendar, all the bios, arranged by diagnosis type or date, add (or update) your bio, our locations around the world, the message boards and chatroom, Helpful Doctors list, add (or update) your Helpful Doctor, support page, scrolling message area for Cushing’s news, Cushing’s blogs, NIH Clinical trials for Cushing’s, pituitary and adrenal, the Cushings Help Organization cause on Facebook, Staticnrg and Cushings on Twitter, new CushieWiki and listen to the Cushing’s podcasts right from this toolbar.

New! CushieWiki: Please feel free to contribute! The CushieWiki is an ever-changing, ever-growing body of Cushing's knowledge provided by *YOU* and other patients.

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Meetings, Bios and Helpful Doctors

• New Jersey/New York Cushie Lunch, February 20, 2010 in Lyndhurst, NJ. More info here.

• Rare Disease Day Feb 28, 2010. More info here.

• 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.

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)
Nathan Lassman, M.D. (Hartford, CT)

New Bio February 3, 2010
Danielle R (Smilez133)
is from Plymouth, Massachusetts. She 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.

New Bio February 2, 2010
Faye R (texastwin827)
is from Austin, Texas. She is not yet diagnosed with Cushing's but she has diabetes, is hypothyroid and is testing.

New Bio January 28, 2010
Nazli
is from Cairo, Egypt. She had Cushing's and a left adrenalectomy 1974. She is testing again for a recurrance.

New Bio January 25, 2010
Robert
is from Maine. He was recently diagnosed with adrenal Cushing's and has had chronic renal issues for over 20 years.

Updated Bio January 23, 2010
Amy (Amelita)
is from Newark, Ohio. She has not yet been diagnosed with Cushing's but she is testing now. Amy has added info on her testing and has added her email address.

New Bio January 20, 2010
Robyn (Robyn)
is from Franklin, Virginia. She was diagnosed with adrenal Cushing's in December 2009. Both of her adrenal glands are now 4 times as large as they should and overactive. Robyn is facing a BLA.

New Bio January 18, 2010
Bruce L
is from Windsor Locks, Connecticut. He hopes that robotic surgery will remove his adrenal tumor leaving most of his adrenal gland so there will be no steroid treatment required.

New Bio January 14, 2010
Amy (Amelita)
is from Newark, Ohio. She has not yet been diagnosed with Cushing's but she is testing now.

New Bio January 14, 2010
Susannah (spiritualgrl26/susannah)
is from Sarasota, Florida. She had an ovarian cyst rupture when she was 18 and she has been diagnosed with PCOS as well as having an adrenal tumor. She doesn't currently have a doctor.

Updated Bio, January 14, 2010
Estela (Estrela)
is from Oxnard, California. She has been diagnosed with adrenal hyperplasia, PCOS, alopecia so far. An endo suggested Cushing's and she is planning to see Dr. Ted Friedman. Estela updated her bio after seeing Dr. Friedman who thinks she may have cyclical Cushing's.

New Bio January 12, 2010
Tim B (tbovs)
is from Sault Ste Marie, Canada. He has been struggling with rapid weight gain and fatigue and headaches for the past 8 years or so. A pituitary MRI recently showed a macroadenoma and he will continue testing.

New Bio January 12, 2010
Monic'
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 will be interviewed in the Cushings Help Voice Chat / Podcast series February 4, 2010.

New Bio January 12, 2010
Collette (ColletteJ)
is from Dundee, Scotland. She has had 3 abnormal cortisol urine tests and one normal. She has a microadenoma on the left side of her pituitary. Despite this she is still not diagnosed.

New Bio January 5, 2010
Brandon (jediknight36)
is from Lewisville, Texas. He is not yet diagnosed with Cushing's but has many symptoms and is testing now. He was interviewed in the Cushings Help Voice Chat / Podcast series. Listen to the archived interview. Brandon has also uploaded videos which are included in his bio.

New Bio January 1, 2010
Deb G (Deb Gal)
is from Sachse, Texas. She is testing now for Cushing's and has had many symptoms since the 1970s.


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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.