Day 1: Cushing’s Awareness Challenge 2015

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!

 

 

 

 

Brigham & Womens Hospital’s Pituitary Day 2014

BWH_Pit_Day

In partnership with the Brain Science Foundation, the Brigham and Women’s Hospital Pituitary Neuroendocrine Center is pleased to present

Pituitary Day 2014

Saturday, March 29, 2013
8 AM – 5 PM
Bornstein Amphitheater
at Brigham & Women’s Hospital
75 Francis Street
Boston, MA

This conference is intended to unite patients, caregivers, family and friends with leading clinicians, researchers, nurses, and other experts to discuss the latest in pituitary diagnosis and treatment. All patients, caregivers, family and friends are welcome!

For more information, please visit brainsciencefoundation.org or call Sarah Donnelly at 781-239-2903.

Information for Cushing’s Patients on Korlym

Please note – On July 1st, Korlym will not be supplied by Curascript and Accredo any more.

Korlym will continue to be available, just through a different pharmacy called Centric Health Resources.  They are trying to reach all of you to introduce you to their program and enhanced services as well as set up your next shipment.

If you have not yet spoken with them, please call them at 866-758-7138.

For reference, their website is: http://www.centrichealthresources.com/

Signifor® (Pasireotide) is now Commercially Available

November 7, 2012 The US Food and Drug Administration’s (FDA) Endocrinologic and Metabolic Drugs Advisory Committee (EMDAC) voted unanimously in support of the use of Signifor® (pasireotide) for the treatment of patients with Cushing’s disease who require medical therapeutic intervention. The recommendation was based on data from clinical trials of pasireotide, including PASPORT-CUSHINGS (PASireotide clinical trial PORTfolio – CUSHING’S disease), the largest randomized Phase III study to evaluate a medical therapy in patients with Cushing’s disease.

Patient Assistance for SIGNIFOR support for patients includes:
– Therapy-specific support programs for out-of-pocket costs
– Alternative assistance searches and referrals to Federal and State assistance programs
– Referrals to Independent Charitable Foundations for assistance with co-pay costs
– Patient assistance for low-income and uninsured patients

For more information, or to speak to a Patient Assistance NOW Endocrinology representative, please call 1-877-503-3377 (select option #3 for SIGNIFOR) Monday to Friday 8 am – 8 pm ET.

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