$Growth Hormone Study Opportunity

 

Here’s your chance to make your voice heard on Growth Hormone Issues.

Anyone interested would sign up with Rare Patient Voice using the CushingsHelp referral Link. You would then get an email invite to the actual study.
Study Opportunity for Idiopathic Short Stature (ISS) Caregivers
This is a 30 min online survey and Compensation is $50
Please sign up at the link below for more information or to see if you qualify

🦓 It’s Time to Sign Up for the Cushing’s Awareness Challenge 2021

I plan to do the Cushing’s Awareness Challenge again. A past year info is here:  https://cushieblogger.com/2018/03/11/time-to-sign-up-for-the-cushings-awareness-challenge-2018/

The original page is getting very slow loading, so I’ve moved my own posts to this newer blog.

As always, anyone who wants to join me can share their blog URL with me and I’ll add it to the links on the right side, so whenever a new post comes up, it will show up automatically.

If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc.  If you have photos, and you give me permission, I’ll add them to the Pinterest page for Cushing’s Help.


The Cushing’s Awareness Challenge is almost upon us again!
Do you blog? Want to get started?
Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Tenth Annual Cushing’s Awareness Blogging Challenge.
All you have to do is blog about something Cushing’s related for the 30 days of April.
There will also be a logo for your blog to show you’ve participated.
Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Cushing’s Help Facebook Groups, on the message boards or an email  and I will list it on CushieBloggers (  http://cushie-blogger.blogspot.com/ )
The more people who participate, the more the word will get out about Cushing’s.
Suggested topics – or add your own!
  • In what ways have Cushing’s made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients?
  • What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that.
  • I have Cushing’s Disease….(personal synopsis)
  • How I found out I have Cushing’s
  • What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing’s
  • Overcoming challenges with Cushing’s (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them….
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing’s?
  • Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I’m not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially?
  • Why do you think Cushing’s may not be as rare as doctors believe?
  • What is your theory about what causes Cushing’s?
  • How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals?
  • What new goals did Cushing’s bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing’s?
  • How Cushing’s affects children and their families
  • Your thoughts…?
maryo colorful zebra

🥸 Cushie 12-Step Program

I “acquired” this from another site and changed the names to protect the innocent…

As you know many of us Cushies have had or have an addiction to Googling.

I suggest anyone who feels compelled to google symptoms go to the message boards to ask for support instead of typing these or any words such as “buffalo hump” in the google search engine. When this is done all roads lead to one thing…… You Eat Too Much!; You’re Depressed!

So, anyone who is about to hit enter on their computer which feeds their Google addiction…. go to the message boards to ask for help. One of the other Cushies who have achieved “Google sobriety” will help you down of the ledge.

1. Admit for now that you are powerless over your urge to Google.
2. Believe that a power greater than you (that would be other Cushies) can help you off that ledge
3. Decide to turn your “fingers” over to a higher power as you understand it.
4. Make a searching and fearless inventory of what you hope to gain from googling.
5. Admit to yourself and to another human being the exact nature of your addiction to Google.
6. Allow other Cushies to assist you when you are so scared you are thinking about googling symptoms.
7. Humbly ask for Xanax, Klonopin or Cortef in order to calm yourself from googling symptoms
8. Make a list of all the diseases you think you have or have had and survived and have a burning ceremony and then…. take a nap.
9. Cite all Google sites you have searched diseases on and delete them from your favorites/history.
10. When you start thinking….STOP….. do something else, like take an inventory of your test results.
11. Seek through prayer and/or meditation to improve your thought process. Do not travel to “OMG’ or “What if” land (this is a serious suggestion).
12. Having had a spiritual awakening as a result of these steps, carry this message to all your Cushie friends and anyone else you know who has a Google addiction.

13. Now I know there isn’t a 13th step, however, if you have noticed you are drinking too much wine or taking too many pills, please remember there are other 12 step programs for that, lol…

So, what about it – what are *your* suggestions to cure Google Addiction?

💉 Helpful Neurosurgeon: Pennsylvania

Lehigh Valley, Pa.,
March 03, 2021

Walter Jean, MD, has joined Lehigh Valley Health Network (LVHN) and will serve as Chief of Neurosurgery.

Jean is a board-certified neurosurgeon with expertise in complex intracranial surgery. He is known world-wide for his expertise in complex brain surgery. With nearly 20 years’ experience in both open and endoscopic skull base surgery, Jean has several clinical interests including acoustic neuromas, pituitary adenomas, skull base meningioma, intraventricular tumors, and trigeminal neuralgia. His acclaimed textbook, “Skull Base Surgery: Strategies,” is used by neurosurgeons across the globe to learn about open and endoscopic skull base surgery.

“I’m excited to join LVHN and continue to build on their solid foundation,” Jean says. “I hope to take LVHN Neurosurgery to the next level with robust clinical activity, research and innovation as well as education.”

As a pioneer, Jean utilizes virtual reality in neurosurgery.

“Virtual reality allows everyday people to fly to new lands in video games, augmented reality takes fighter pilots through scenarios training them for the unexpected,” Jean says. “Now brain surgeons and patients can also use these technologies to fly through the brain.”

Why is this so important? Jean says for those who find themselves in need of complex brain surgery, not only can they better visualize their upcoming procedure, their surgeon also gains additional insight. Jean is the only physician in the area using this groundbreaking technology.

“We meet hundreds of patients and explain to them our surgical plan,” Jean says. “That communication can be difficult at times. Once we have a patient’s brain scans loaded into the augmented reality software, they have the ability to see their own anatomy to gain a better understanding. When patients place the headset over their eyes, they are transported to a virtual replica of their own brain.”

The experience offers a visual explanation which is often easier to understand than medical terminology.

Another benefit of this leading-edge technology is that it allows brain surgeons create a surgery plan by simulating different scenarios to find the best approach. “The genesis of the technology is from air fighter pilots. The founders of the company discovered they could use the same technology in the medical field,” Jean says. “Just like fighter pilots, brain surgeons are able to practice unique scenarios to be fully prepared for their mission.”

Jean comes to LVHN from George Washington University Hospital, where he was a professor of neurological surgery. A native of Hong Kong, Jean attended Princeton University, where he graduated summa cum laude, and Cornell University Medical College, where he graduated at the top of his class and was elected Alpha Omega Alpha, a medical honor society. He completed neurosurgical training at the University of Minnesota, and fellowship in Skull Base Surgery at the University of Cincinnati.

Jean’s academic credentials includes being Program Director at Georgetown University for 7 years. He has authored numerous scholarly publications and has an international reputation as an energetic lecturer and passionate teacher of neurosurgery. Jean serves as reviewer for many high-impact journals such as the Journal of Neuro-Oncology, World Neurosurgery, Operative Neurosurgery, and Journal of Neurological Surgery, Part B. He is an active member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons and the North American Skull Base Society and serves frequently as faculty at their national meetings.

📞 eSummet: Quality of Life of Pituitary Patients

Register Now! 2nd annual WAPO eSummit March 19 & 20, 2021
World Alliance of Pituitary Organizations represents the voice of 37 patient advocacies around the globe. This event is also translated into Español, there’s something for everyone!

The World Alliance of Pituitary Organizations (‘WAPO’) represents the voice of 37 patient advocacies around the globe.

We seek to empower and improve the Quality of Life of Pituitary Patients, by sharing knowledge and inform you about treatment choices.

By registering to the WAPO eSummit 2021, you will have a unique opportunity to learn about the latest medical research, raise questions and dialogue with international experts on the pituitary gland!

Get involved and register in one of the provided languages.

We are looking forward to meeting you!

For more information visit the link below.

📞 Cushing Syndrome and COVID-19

About

Who Should Attend: Individuals with Cushing’s disease and their caregivers.

When: Thursday, March 4, 2021, 6 PM, Eastern

Where: Virtual presentation via Zoom. Click the Zoom link for the online event or call one of the phone numbers below:

833-548-0276 (US Toll-free)
833-548-0282 (US Toll-free)
877-853-5257 (US Toll-free)
888-475-4499 (US Toll-free)

Whether you log on via computer or telephone, you will be asked for the meeting ID and password.

Meeting ID: 969 3392 7432
Passcode: 945590

Attendees will be muted until the end of the presentation, at which time we will take questions.

There is no fee for this event.

Contact Maggie Bobrowitz with any questions: Margaret.Bobrowitz@DignityHealth.org or (888) 726-9370.