Human Growth Hormone Study

Research opportunity for Human Growth Hormone Deficiency caregivers of adolescent patients. This is a 75 min web-assisted phone interview, and the compensation is $125.

Please sign up at the link below to receive an email invite to the survey.

https://rarepatientvoice.com/CushingsHelp/

🎤 Mary O’Connor (MaryO) second archived interview with Robin Smith (staticnrg)

 

Robin had Cushing’s for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said “endocrine”. She didn’t figure it out, either, but at least Robin had a piece of the puzzle and she found cushings-help.com. Robin immediately went into denial and left for several months until she got so sick she knew she had to have help. She had originally sought this PCP because she had been going to all sorts of doctors.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/03/07/symptoms-and-diagnosis-part-2-cushings-message-board-members

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🎤 Archived Interview: Cushing’s Diagnosis and Symptoms, part 2

 

Listen as Robin Smith (staticnrg) and Mary O’Connor (MaryO) co-host Cushing’s message board members calling in to talk about their fight for diagnosis and treatment. The show will be opened with a brief explanation of what Cushing’s is and what the symptoms are.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/03/13/-cushings-diagnosis-and-symptoms-part-2

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🎤 Archived Interview with Judy, Mom to Two Cushing’s Patients, and her Daughter, Jess

 

Interview with Judy, the mother of two Cushing’s patients, and her daughter, Jess, a high school student with Cushing’s. Robin (staticnrg) hosted.

Sadly, Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness.  She was a great warrior for her children.  Here’s her bio: https://cushingsbios.com/2019/12/15/in-memory-judy-kennedy-december-15-2019/

 

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/17/judy-mom-to-2-cushings-patients-and-her-daughter-jess

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🎤 Archived Interview: JenS discussed Bilateral Adrenalectomy (BLA)

Jen had Pituitary surgery by Dr. Shahinian 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma.

She was diagnosed by Dr. Theodore Friedman as cyclical pituitary Cushings.

Her second Surgery 7/21/04 for infection resulted in neuralgia. She had a BLA in March 2006 as Corticol Hyperplasia returned and she now has possible Nelson’s syndrome. Jen also has Thyroid Issues (Hashimoto’s, multiple nodules and entire thyroid removed 2003) and she is Growth Hormone Deficient (3/2006)

Listen at http://www.blogtalkradio.com/cushingshelp/2008/02/29/jens-discusses-bilateral-adrenalectomy-bla

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🎤 Archived Cushing’s Awareness Day Voice Chat!

Listen as Jayne Kerns and Robin Smith (staticnrg) hosted a Cushing’s Awareness Day Special Chat a few years ago.

This chat had callers and some testimonials for the website and Mary O’Connor (MaryO). Ideas were discussed for setting up non-profit status for this website.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/09/special-cushings-awareness-day-voice-chat

 

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🎤 Archived Interview with Mary O’Connor aka MaryO, Cushings-Help.com founder

As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.

The series is still going on, so if you’d like to be a part of this, just let me know.  You can fill out this form and check off that you want to do an interview – Add Your Bio

There are currently 89 interviews in our series.  This is the first one:

Interview with Mary O’Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing’s Survivor. Robin (staticnrg) hosted.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/03/mary-oconnor-aka-maryo-cushings-helpcom-founder

Some of the comments:

This is the first podcast I have listened to. How wonderful to hear your voices! Thank you Mary for sharing your story and for Robin for being the perfect host. This is a wonderful way of hearing about many of our journies with this awful disease – just brilliant!

Great topic……more awareness is needed as I’m convinced this is under-diagnoised vs. uncommon!!

The information age and innovative thinking meets new medical needs

Great show. informative and potentially life saving

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🎤 Archived Interview: Symptoms and Diagnosis: Cushing’s Message Board Members

As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.

The series is still going on, so if you’d like to be a part of this, just let me know.  You can fill out this form and check off that you want to do an interview – Add Your Bio

There are currently 89 interviews in our series.  This is the second one:

Robin Smith (staticnrg) hosted as Cushing’s message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing’s is and what the symptoms are.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/10/cushings-members

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Webinar on Dr. Friedman’s views on the Pituitary Society “Consensus” Guidelines on Cushing’s disease and new Cushing’s medicines

Although Dr. Friedman is at the forefront of Cushing’s Disease, he was not invited to be part of the Pituitary Society Consensus Guidelines on Cushing’s Disease published in Lancet Diabetes and Endocrinology in 2021, many of his ideas on Cushing’s Disease that he has been advocating for years were included in the recent guidelines. In this informative webinar, Dr. Friedman will discuss

  1. The use of imaging for the diagnosis of Cushing’s Disease
  2. The need for multiple testing to diagnose episodic Cushing’s Disease
  3. The importance of UFC and salivary cortisol testing
  4. The use of medication trial prior to surgery
  5. The use of ketoconazole for the medication trial and longer-term treatment
  6. Dr. Friedman will also discuss new Cushing’s medications.
Sunday • April 3 • 6 PM PST

Via Zoom Click here to join the meeting or
https://us02web.zoom.us/j/4209687343?pwd=amw4UzJLRDhBRXk1cS9ITU02V1pEQT09
OR
+16699006833,,4209687343#,,,,*111116#
Slides will be available on the day of the talk here. You can also click to read the consensus guidelines
There will be plenty of time for questions using the chat button.

For more information, email us at mail@goodhormonehealth.com

Record a Video, Receive A Rarity T-Shirt!

@happygirl – this looks perfect for you with all your videos!  If you or anyone else from the boards does this, please let me know :)

Help Rare Patient Voice spread the word to other patients and caregivers about RPV by submitting a short video on your experience with us. Check out the growing group of patients and caregivers who have recorded stories: https://rarepatientvoice.com#sharevoice. As a thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card.

Follow these steps to record and submit your own video!

 

Step 1: Scan with code below with the camera app from your Apple/Android mobile device or click the link below!

https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice

 

Step 2: Download the Storyvine app from the App Store or Google Play

Step 3: Film and upload your video!

To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card. Congratulations to Natalie of California, our January 3 raffle winner! Our next raffle will be held in early February.