Want to connect with other Cushing's disease Patients

Hi @gretchenmpls, allow me tag a few other members living with Cushing’s Disease like @cheryl1 @jmb73 @astaingegerdm @dmedina71 and others so you can connect.

Gretchen, how are you doing?

@gretchenmpls
It’s good to hear that your surgery was successful.
My daughter also had a pituitary adenoma and had surgery 2010 at age 27. Surgery was successful.
You are right about postop treatment- we were not adequately prepared for the tapering of the hydrocortisone. We had to make several phone calls in the beginning to make sure we did it right.
We were also disappointed at how little information about life after Cushing’s was given. I know everyone is different. My daughter was very ill when she finally was diagnosed. She had a rough time and could not return to normal life for quite a while. The endocrinologist would not extend her time on disability.
There is a Cushing’s group on Facebook.
Cushing’s education should actually be extended to include physicians. Most doctors have never seen a patient with Cushing’s.
The surgeon asked my daughter for copies of photos of herself at different ages that she brought along. He planned to use them when he was giving lectures. He could see early signs of Cushing’s at a young age when she was thin.

Did you get a response on this? I would be interested. Thanks

Thank you, @colleenyoung for some reason I missed a notification that you had responded. Thank you for sharing other usernames to connect with. I've been on professional calls with Irina Bancos at Mayo and may reach out to her as a starting point for a potential event to be held at Mayo for both physicians and patients to hear more about Cushing's disease diagnosis and quality of life thereafter. Do you have other people to suggest at Mayo that might be interested in helping with an event like that? How do other informational days get started for other rare diseases at Mayo? Your time is appreciated.

Hello @astaingegerdm thank you for your response! I'm sorry I missed this until now. I know what your daughter went through. My physician gave me only 2 weeks worth of steroids. I didn't even know of a potential 6 month taper period. It was hell on earth. Three years later I'm still dealing with medical mysteries of other symptoms that have occurred due to the destruction of having had Cushing's.
There are multiple Cushing's groups on Facebook, some are "better" than others. It's important that information is accessible, yet free from misinformation. I have joined one that seems appropriate and have not only checked in with others, but offered guidance based on my knowledge after having joined the Cushing's Support and Research Foundation. I personally am working hard on trying to educate physicians even through my own medical troubleshooting. Hosting education days are one way we can reach physicians. Our Foundation also conducted a global survey on the Quality of Life of a Cushing's Patient to which we are beginning to share those findings on our Instagram and FB pages. We will be creating abstracts to share at medical conferences.

I hope your daughter is doing better! I agree, we don't get back to normal. We find a new normal and slowly find all the positive changes that occurred with us to start a new chapter.

Hello @cadenise1 thank you for writing! I'm catching up on this chain 🙂 I hope you are doing well! I've added some comments to these posts and hopefully will start something. I have not received any responses other than what is listed here. I will try to pursue any leads provided and get something going. Both physicians and patients need this support! Thank you for your interest. May I ask, have you heard of the Cushing's Support and Research Foundation? http://www.csrf.net It's a bit muddled, but lots of good information and we are launching the first ever Cushing's Patient Registry in 2024, very exciting!!

@cheryl1 @jmb73 @astaingegerdm @dmedina71 Hello everyone! I would love to touch base with you all if you have interest in supporting a patient and physician Cushing's Day at Mayo sometime. I could use the support 🙂 The first step is finding a couple ambassadors at Mayo who are physicians that would be willing to help support a day such as this. Also, I've connected with a couple people in Minnesota who are personally vested in reaching other physicians and patients in our community outside of the national presence of the Cushing's Support and Research Foundation. If you are personally interested in helping with those efforts, I'd love to chat more. What's the best way to get connected via email for those that are interested?

@gretchenmpls
It’s a great idea you have about a Cushing’s day. Let’s assume that there are a couple of physicians with Cushing’s knowledge willing to take part in discussions. How many patients do you think would be able to travel to Mayo? The session could be recorded for anyone to see later, right?
My daughter was active with csrf some years ago. At that time Mary Lee Vance from UVA was in charge.
13 years later my daughter still finds health conditions caused by the high cortisol levels.
She has a Cushing’s friend who did quite well after surgery. However, this woman was diagnosed early enough to avoid many of the post surgery problems.

@astaingegerdm
Hard to say the number of patients taking part until I dig in a little. I think there's a pretty large group in MN to begin with as well as surrounding states. I was thinking also how we could incorporate both patient as well as physician education. Almost a 2-part series...a patient panel educating physicians and a physician panel educating patients. It's also unknown to me how to position information so that physicians will respect the information. Having been working for the Cushing's Support & Research for 6 months now, there is almost just as much misguided assumptions that physicians have of Cushing's as there is patients who don't have the knowledge. I'll need to spend some time with this topic, but those are my thoughts at the moment. 🙂

@gretchenmpls, my first recommendation is that you mark your calendar to attend CareThatFits (https://carethatfits.org/) at Mayo Clinic next year - September? 2024

Read more about patient and physician participation at the annual conference here: https://carethatfits.org/conferences/