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: https://www.csrf.net
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:
https://www.uptodate.com/contents/cushing-syndrome-treatment-beyond-the-basics
National Alliance for Caregiving – Rare Report
Access several resources here: https://www.caregiving.org/rare/
CSRF Member Quality of Life Survey Reports
Read more about it here: https://csrf.net/reportsandpresentations/
Adrenal Crisis Information
Cleveland Clinic’s detailed webpage about this condition: https://my.clevelandclinic.org/health/diseases/23948-adrenal-crisis
Glucocorticoid Withdrawal Syndrome Article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9170649/