📞 Webinar: Delays in Diagnosis of Pituitary Tumors: Why They Happen and Steps to Prevent Them

Presented by

Kenneth M. De Los Reyes MD, MSc
Assistant Professor
Co-director of Skull Base Surgery
Director of Quality Assurance
Department of Neurosurgery
Loma Linda University Medical Center

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: Wednesday, December 13, 2017
Time: 10:00 AM – 11:00 AM Pacific Standard Time 1:00 PM – 2:00 PM Eastern Standard Time

Webinar Description

Learning Objectives:

Building Patient and Medical Provider Awareness

  1. To build awareness among patients and medical providers of early signs and symptoms of pituitary and pituitary related tumors
  2. To understand the consequences of delays in diagnosis of pituitary tumors
  3. To outline steps for patients and medical providers to take to prevent delays in diagnosis of pituitary tumors.

⁉️ Can You Help? Adderall and Cushings

Recently posted on the message boards at http://cushings.invisionzone.com/topic/54332-adderall-and-cushings/

I was recently diagnosed by the NIH with Cushings and Adrenal hyperplasia due to a tumor in my adrenals.  I have taken Adderall for a few years now for what I thought was ADD.  Can Adderall increase cortisol levels since it is a stimulant?

If you will respond here or in the comments, I will post your answer to the boards.

📞 Salivary Testing Webinar

Finally, the dream has come true.

Testing your salivary cortisol can now be done on your iPhone with Point of Care (POC) technology. Join Dr. Friedman for a webinar informing the Cushing’s and Addison’s community on the newly available Peak Biometric Research Stress Management System that offers a quick, private, and non-invasive way to measure cortisol levels —without the hassle and expense of sending samples to a lab. Dr. Friedman will go over how to order and use the POC salivary cortisol monitor. He will explain that the product is not FDA-approved for diagnostic purposes and how to use it with commercial salivary testing. There will be plenty of time for questions and discussion.
salivary cortisol webinar
Sunday, November 19, 2017
6:00 pm | Pacific Standard Time (San Francisco, GMT-08:00) | 1 hr

Meeting password: cushings
join the meeting by clicking here.

Join by phone
+1-855-797-9485 US Toll free
You can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat” and the videoconference will be posted on goodhormonehealth.com a few days after. You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions.

⁉️ Cushing’s Survey

Cushie Jessica G writes:
​​​​​​​
“I am writing a research paper for my final exam. My thesis is that Cushing’s syndrome/disease is not rare, but frequently missed or under-diagnosed.

I have created 2 separate surveys as part of my research. One survey is for people who are undiagnosed but currently seeking diagnosis, the other is for people who have been diagnosed and treated.

Please take these quick surveys. I’m hoping that by incorporating these statistics into my paper I can make a valid argument and help raise awareness for all of us.”

— survey for undiagnosed people
https://www.surveymonkey.com/r/ZL77M97

— survey for diagnosed people
https://www.surveymonkey.com/r/6PQ7J87

❣️ Hooray!

 

Hooray!  The boards have been fixed and all is well with the world!  🙂

http://cushings.invisionzone.com/

⚠️ Message Board Issues :(

The Message Boards are currently offline. From Tech Support…

Hello,  I apologize here for the trouble, there seem to be some issues with your site after our move to the new cloud yesterday, we have our team looking into these issues now and will get back with you as soon as we can. Currently, the site is not loading the index files properly, in which we are addressing.

We will be back with you as soon as we have this corrected.

Thank you

⚠️ Yet Another Message Board Upgrade

Another message board upgrade happening right now. I’m not sure how long it will take (or what cosmetic changes need to be done afterwards.

At this moment, the links on the board to the front page are not working.  Use this instead: http://cushings.invisionzone.com/index.php?

Also, if you use Activity Streams, they’re not working, either.  I get a long error message.  The boards are only 86.62% complete as I write this.  Hopefully, the Activity Streams will fix themselves when it gets to 100%.

If you see any other issues I should be watching for – and maybe correct later – please let me know.

Patience, please!

FWIW – I see we have the Twitter and Facebook share boxes back. Even if you share from the boards, people on these other services will not be able to see anything other than the beginning snippet unless they are board members and they log in.

 

📺 NIH: Discovery Channel’s Documentary Series ‘First In Human’

Unprecedented Access Inside the National Institutes of Health’s Building 10
Premieres August 10

Directed by EmmyÂŽ Winner John Hoffman; Produced by McGee Media

Near the nation’s capital, on the campus of the National Institutes of Health, sits Building 10: the largest hospital in the world devoted solely to research. Inside, our country’s most brilliant scientific minds carry out some of medicine’s riskiest and most critical research, testing new treatments in people for the very first time.

With unprecedented access to the halls of Building 10, First in Human reveals for the first time how the medical breakthroughs of tomorrow make their way out of the hi-tech research laboratories and into the hands of our world’s medical professionals. The series explores the lives of the doctors, researchers, and patients who together make progress possible in this cutting-edge testing ground. Narrated by Emmy,® Golden Globe®, and Critics Choice® winning actor Jim Parsons (“The Big Bang Theory,” “Hidden Figures,”) directed by Emmy winner John Hoffman, and executive produced by Hoffman and Emmy winner Dyllan McGee, the three-part documentary series begins airing in August 10 at 9pm ET/PT exclusively on Discovery.

Because the treatments they’re testing are so new and their outcomes are entirely unknown, the doctors leading first in human trials at Building 10 can only partner with patients who have exhausted the options the medical establishment has to offer. This doctor-patient partnership is utterly unique to medicine: live or die, each of these brave “first in human” volunteers immediately becomes part of medical history. Previous trials in the building led to the development of modern chemotherapy treatments, the first treatments for HIV/AIDS, and the first successful gene therapy.

First In Human represents the first time cameras have embedded in Building 10 and followed first in human patients throughout their entire trial. This unique access is the product of Hoffman’s nearly twenty years of filmmaking in partnership with the NIH on projects such as The Alzheimer’s Project and The Weight of the Nation.

“NIH’s Building 10 has given generations hope when they need it most,” comments Rich Ross, Group President, Discovery Channel, Animal Planet, Science Channel, and Velocity.  “We are proud that the NIH has invited Discovery inside their doors for an unvarnished look at how these brave men and women work hand in hand with their doctors and technologists to seek cures to the most confounding diseases that exist.”

“Because of the very nature of first in human trials, most of the patients who enter Building 10 to enroll in them are remarkably unique: all standard care out in the world has failed them,” says Hoffman. “What was most powerful about embedding in Building 10 and following these trials was observing how the doctors and patients came to rely on each other in a true partnership to advance medicine.”

States Parsons, “I know that everyone who watches First in Human will feel the same sense of pride I did when I discovered this incredible institution that our country created. I hope viewers will share the sense of gratitude and awe that I felt when learning about the human beings who bravely put their lives in the hands of some of our most innovative scientists and doctors as they search together for the medicines and cures that give all of us fuller, longer lives. This is truly the story of how we, as human beings, function: both at an elemental level and at our most profound.”

“The NIH Clinical Center’s more than 60-year history has resulted in remarkable medical advances, from the first use of chemotherapy to treat cancer, to the development of the technique to keep the blood supply clean and safe from viruses,” said NIH Director Francis S. Collins, M.D., Ph.D. “For millions of patients around the world, it is known as the National Institutes of Hope.”

From leukemia to sickle cell disease to the rarest diseases on the planet, First in Human captures the stories of the doctors, researchers, staff, and, most importantly, the patients and families in this remarkable facility that together are pushing far into the unknown.

FIRST IN HUMAN is produced by McGee Media for Discovery Channel.  The series is directed by John Hoffman; produced by, John Hoffman, Beth Wichterich, and Michael Epstein; narrated by, Jim Parsons; executive producers Dyllan McGee, Jim Parsons, Todd Spiewak, and Eric Norsoph; producer, Jon Bardin; supervising producer, Stacia Thompson; senior editor, Adriana Pacheco; director of photography, Simon Schneider.  For Discovery Channel, supervising producer, Jon Bardin; executive producer, John Hoffman.

 

From https://corporate.discovery.com/discovery-newsroom/jim-parsons-set-to-narrate-discovery-channels-documentary-series-first-in-human-the-trials-of-building-10/

🔵 New on the Message Boards ~ July 29, 2017

 

A quick summary of some of this week’s activity on the Cushing’s Help message boards.

 

The Guest Questions have returned on a trial basis.  At the moment, new guest questions are not moderated.  Guests may ask for information and (hopefully!) board members will answer.

There is one question so far on How to search the boards?

A New Introduction at Jasmine, Possible Cushie, Stressed Beyond Belief!

More on an insurance issue in Dr F Update

Just for fun, I’ve added other images to Announcements, Questions About How These Boards Work? and Introduce Yourself to help newcomers find their way.

Information about A Phase III Study of Osilodrostat to Treat Cushing’s Disease

A long-time board member reports that she is Cured! No Surgery 🙂

The ups and downs of Blood Pressure

There’s other stuff happening but you’ll just have to read the boards to find out what!

(Please note that I’m sharing these from the Cushings-Help.com message boards. You must be a logged-in member of that board to read them. Log in or register at http://cushings.invisionzone.com )

Please join us!

 

❣️Love the Slide!

I wasn’t able to attend this year’s Magic Foundation Cushing’s Conference in Chicago, but several of my Cushie friends went.

Love this picture that came up in one of the presentations 🙂