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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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Last Updated on Thursday, 08 April 2010 11:49
 
Current Newsletter, February 4, 2010 PDF Print E-mail
Written by MaryO   
Thursday, 04 February 2010 00:00
Cushing's Help Newsletter, February 4, 2010
This email newsletter contains graphics, so if you don't see them, view it in your browser.

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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Last Updated on Thursday, 04 March 2010 12:13
 


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.