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.

I have been suffering from Cushings for probably 20 years but officially diagnosed February 2025. I had my pituitary Adenoma removed in April. I found out that I have another pituitary tumor now. My cortisol dropped but not below 5. So I am still living like I have Cushings. Exhausted, irritable, and in pain. I would like to very much connect to others. I know of no other person that has this around me. It’s quite a journey.

REPLY
Please sign in or register to post a reply.