Day 1: Cushing’s Awareness Challenge 2015

Posted on April 1, 2015 by MaryO

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on the 8th.

30-posts

 

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

This year’s logo, also thanks to Robin:

cushie-blogger-2015-large

 

April Fool's Day

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

It’s Literally Impossible to Have Cushing’s

 

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

 

 

 

 

Filed under: Cushing's, pituitary, Rare Diseases, Treatments, Video | Tagged: , , , , , , , , , , , , , , , , , , , , , , | Leave a comment »

Webinar: Psychosocial Aspects of Pituitary Disease

Posted on March 15, 2015 by MaryO

Jessica Diller Martino
Professor – History of Psychology
City University of New York

Register Now!

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

Date: Thursday, March 19, 2015
Time: 10:00 AM – 11:00 AM Pacific Standard Time

Webinar Description:

Please join us on March 19th for a webinar on a topic that is too often ignored: the mental health of pituitary patients. Jessica Diller Kovler, Professor in the History of Psychology at the City University of New York, will join us to discuss psychosocial aspects of pituitary disease.

Learn about the symptoms before and after diagnosis, which symptoms are observed in each type of pituitary dysfunction, and learn ways to cope and connect with others.

Presenter Bio:

Jessica Diller Kovler is a Professor in the History of Psychology at the City University of New York, where she is researching psychosocial aspects of pituitary disease. She is also a medical journalist and former reporter for The New York Times, and has worked collaboratively with the Pituitary Network Association for over a decade.

Filed under: Meetings and Conferences, pituitary | Tagged: , , , | 2 Comments »

The Voices of Cushing’s Disease

Posted on March 2, 2015 by MaryO

The perspectives of individuals living with Cushing’s disease, their caregivers and advocates.

In creating this series, Novartis hoped to shine a spotlight on key factors involved in living with Cushing’s disease, including diagnosis, disease management and the importance of a strong support network.

The video series has been posted on the Novartis YouTube channel and can be viewed via the following links:

Filed under: adrenal, Cushing's, pituitary, Treatments, Video | Tagged: , , , , , , , , , | Leave a comment »

Call for Papers: Cushing’s Syndrome: New Evidence and Future Challenges

Posted on November 13, 2014 by MaryO

Call for Papers

Cushing’s syndrome is a rare and potentially lethal disease which still represents a challenge for the endocrinologists, being characterized by elevated morbidity even long-term after the remission of hypercortisolism. Several diagnostic issues prevent an early recognition of the disease and rate of recurrence is significantly high after surgical, medical, or radiotherapy management.

Recent advances of biology and medicine are improving our knowledge on genetics and pathophysiology of this disease, both at the pituitary and adrenal level. New therapeutic agents are currently under investigation and an impelling need for efficacy and safety studies is rising in the endocrinology community. At the same time, the role of the “old” agents in the clinical practice is under debate and deserves a thorough analysis on larger series than those currently available. Likewise, the need for specific treatment of comorbidities is a clinical question which still remains unsolved.

We invite authors to submit original research and review articles that will stimulate the continuing efforts to understand the molecular pathology underlying Cushing’s syndrome, the development of strategies to diagnose and treat this condition in adults and children, and the evaluation of outcomes.

Potential topics include, but are not limited to:

  • Advances in genetics of Cushing’s syndrome
  • Diagnostic issues in Cushing’s syndrome
  • Novel paradigms for treatment of Cushing’s syndrome
  • Role of the “old” pharmacological agents in the treatment of Cushing’s syndrome
  • Persistent increased mortality and morbidity after “cure” of Cushing’s syndrome
  • Role of inflammation in the pathogenesis of Cushing’s syndrome
  • Cushing’s syndrome as model of metabolic derangements
  • Challenges in the diagnosis and treatment of paediatric Cushing’s syndrome
Manuscript Due Friday, 8 May 2015
First Round of Reviews Friday, 31 July 2015
Publication Date Friday, 25 September 2015

Lead Guest Editor

  • Elena Valassi, Autonomous University of Barcelona, Barcelona, Spain

Guest Editors

From http://www.hindawi.com/journals/ije/si/156126/cfp/

Filed under: adrenal, Clinical trials, Cushing's, pituitary, Rare Diseases | Tagged: , , , , , , , | 1 Comment »

Cushing’s Awareness Challenge 15

Posted on April 15, 2014 by MaryO

robin-dontsay

A continuation of the last post with another of Robin’s great images.  I’ve also heard many of these comments.

I did have #6, cancer – kidney cancer or renal cell carcinoma – in 2006 and the diagnosis was much faster/easier than Cushing’s.  My cancer diagnosis took about an hour in the emergency room.  Cushing’s took about 5 years or so.  Cancer surgery recovery was faster with fewer long-term consequences.

When I told people I had cancer, everyone understood.  When I told them I had Cushing’s, no one did.

That being said, I don’t recommend getting either cancer or Cushing’s!

 

maryo colorful zebra

Filed under: Cancer, Cushing's | Tagged: , , , , , , , | Leave a comment »

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