Want to connect with other Cushing's disease Patients

Posted by gretchenmpls @gretchenmpls, Sep 14, 2023

I was diagnosed with Cushing's in 2020. I had a pituitary adenoma. Surgery was successful, however the post-op treatment was not. Education for patients as to what to expect after surgery and how to handle steroid tapering is not terribly well distributed. I since joined the Cushing's Support and Research Foundation and live in Minneapolis. Since Mayo is so close to me, I'd love to connect with more Cushing's patients and see if there is interest that would prompt Mayo to host a Patient Education Day for Cushing's Disease. Any takers out there? You don't even have to be in Minnesota, just would love to have people connect with Cushing's Support and Research Foundation to support other patients going through the tough journey that we have.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

Jess | @longhaulerjess | Jun 2 10:50am

I had blood work done and my cortisol levels are high. I am waiting to see an endocrinologist. Has anyone else been diagnosed with this or adrenal issues? I’ve been a long hauler since Nov 2020 I had an MRI of the brain that showed partial empty sella syndrome but I was told not to worry about it. I’m going to ask the endocrinologist to do another MRI and check for a pituitary tumor.

gretchenmpls | @gretchenmpls | Jun 3 11:46am

In reply to @colleenyoung "@gretchenmpls, my first recommendation is that you mark your calendar to attend CareThatFits (https://carethatfits.org/) at Mayo..." + (show)

Hello Colleen @colleenyoung ,
I checked the Care That Fits calendar and it looks like there isn't any information posted yet for September. Is your recommendation to attend that conference to see how something could work for a patient day for Cushing's in the future? Or what is is that feel is most important for attending? Thank you for your guidance.

Colleen Young, Connect Director | @colleenyoung | Jun 14 6:20pm

In reply to @longhaulerjess "I had blood work done and my cortisol levels are high. I am waiting to see..." + (show)

@longhaulerjess, I moved your post looking for members who have Cushing's discussion to this existing discussion:
- Want to connect with other Cushing's disease Patients
https://connect.mayoclinic.org/discussion/cushings-patient-education-day/
I did this so you can connect with @gretchenmpls @cheryl1 @jmb73 @astaingegerdm @dmedina71 and others.

How are you doing? Did you have a consult with an endocrinologist?

Jess | @longhaulerjess | Jun 18 2:54pm

In reply to @colleenyoung "@longhaulerjess, I moved your post looking for members who have Cushing's discussion to this existing discussion:..." + (show)

Thank you! Not yet my appointment is on July 24. So many physicians are booked.

mandychelle74 | @mandychelle74 | Jun 19 11:37am

I have Cushings Disease for the fourth time. I’ve had 4 pituitary tumors. 3 failed surgeries. I Just started on Isturisa medication and will start radiation in a week.

gretchenmpls | @gretchenmpls | Jun 20 10:12am

@mandychelle74 @cheryl1 @jmb73 @astaingegerdm @dmedina71
Hello everyone, I am coordinating a Cushing's patient support group time for end of July, early Aug to be held in Edina/Richfield area. There were 5 of us who met last month casually and it was a great time. Those participants had all had surgical treatment. Please respond to me with your email address if you'd like to attend. I don't want to put someone's address on this public forum. @colleenyoung what is the best way for people to be in touch off-line of this forum if we want to get together? I don't want to intrude on privacy. Thanks!

Colleen Young, Connect Director | @colleenyoung | Jun 25 5:48pm

In reply to @gretchenmpls "@mandychelle74 @cheryl1 @jmb73 @astaingegerdm @dmedina71 Hello everyone, I am coordinating a Cushing's patient support group time..." + (show)

@gretchenmpls, people can share their contact information using the private message function:
https://connect.mayoclinic.org/help-center/

gretchenmpls | @gretchenmpls | Jul 10 9:35am

Hello @cheryl1 @jmb73 @astaingegerdm @dmedina71
We (Cushing's Support and Research Foundation) are hosting a patient dinner in Minneapolis on Friday, Sept 6. We are reaching out to Cushing's patients (who have been diagnosed) to see if they'd like to join us, meet other Cushing's patients in the area and have a nice dinner while we share stories and just get to know one another. We have room for 20 people and it's complimentary for the patient and their caregiver/loved one who helped them through their journey. If you'd like to attend, please RSVP here:
https://www.surveymonkey.com/r/2024patientdinners
@colleenyoung I hope it's ok that I post this invitation.

gretchenmpls | @gretchenmpls | Jul 10 10:57am

In reply to @gretchenmpls "Hello @cheryl1 @jmb73 @astaingegerdm @dmedina71 We (Cushing's Support and Research Foundation) are hosting a patient dinner..." + (show)

adding @terryfriedman

terryfriedman | @terryfriedman | Jul 14 1:45pm

Hi I would like very much to correct with people struggling with Cushings disease. In pain puffy face gained 22 pounds in waistline in 24 days. Humpback bruising on arms no energy getting B12 shots for energy. My cushings disease was caused by steroid use for cervical neck and sciatica due to car accident. Deep sadness with tears almost daily. Need some support thankyou kindness regards Terry Friedman