One-Pager Resources

Cushings New Diagnosis Tips (click to view/download full document)

Receiving a Cushing’s diagnosis can be quite a pivotal moment when it finally provides an

explanation for the often devastating symptoms most patients experience. Now, you’re on a

quest to regain your health and well-being. Drawing from our personal stories, we aim to offer

insights into dealing with this condition that are not always readily available in medical

literature. How cortisol has affected our bodies made each of our journeys unique, just as yours

will be, but you’ll also find many commonalities.

Cushings Post Treatment Tips (click to view/download full document)

You’ve completed your treatment and you’re now on the “road to recovery”. This is a time

when peer support from other patients becomes especially helpful because there isn’t a lot of

deep detail in the literature yet. CSRF has been collecting this exact data for years in surveys

designed by teams of patients. Links to some of these study materials can be found below.

Cushings 3-6 Months Post Treatment Tips (click to view/download full document)

You’ve been through treatment and are wondering when you will start feeling better. Our

medical teams give us some initial data about what to expect after surgery, but most patients

report that they were not prepared for just how complicated it would be. Most patients also

agree that they want to know what is realistic, even if some of it is difficult.


Here you will find resources listed at the bottom of our various educational one-pagers; just scroll down until you find the link(s) you’re looking for.

Our website! 

You can navigate from this page, or reach the homepage in a new tab by clicking this link:

Email us! (put together the spelled out email address, sorry about that but trolls and bots have found the rare disease space)

Leslie Edwin, President – leslie at csf dot net

Gretchen Jordan, Associate Director – gretchen at csrf dot net

General Inbox, Checked Weekly – cushinfo at csrf dot net

Connect with other patients via our monthly Zoom Support Calls no matter where you are.

The current schedule is listed on the front page of our website so you can see when the next one will be.  You can let us know to send you a reminder and the call-in links for one or more future calls by indicating your preferences here.

UpToDate Page: Cushing’s Syndrome Treatment Beyond the Basics

UpToDate is a website intended “to help medical professionals make appropriate care decisions and drive better outcomes, UpToDate delivers evidence-based clinical decision support that is clear, actionable, and rich with real-world insights.”  Their page on Cushing’s Syndrome treatment is maintained by two of our most amazing Cushing’s community specialists and serves as an excellent resource for patients as well:

National Alliance for Caregiving – Rare Report

Access several resources here:

CSRF Member Quality of Life Survey Reports

Read more about it here:

Adrenal Crisis Information

Cleveland Clinic’s detailed webpage about this condition:

Glucocorticoid Withdrawal Syndrome Article



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