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Want to connect with other Cushing's disease Patients
Diabetes & Endocrine System | Last Active: Jul 16 1:22pm | Replies (29)Comment receiving replies
@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.
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@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. 🙂