Leslie Edwin, President of the Cushing’s Support and Research Foundation (CSRF), and Gretchen Jordan, Associate Director of the CSRF, discuss their personal diagnostic journeys.




Cushing’s syndrome is a rare endocrine disorder caused by prolonged exposure of the body’s tissues to high levels of cortisol. Signs and symptoms of Cushing’s syndrome include:

  • Upper body obesity
  • Fatigue
  • Muscle weakness
  • High blood pressure
  • Backache
  • High blood sugar
  • Easy bruising
  • Bluish-red stretch marks on the skin

Affected women may also experience irregular menstrual periods and increased growth of body and facial hair. This condition may be caused by a variety of factors including long-term use of corticosteroid medications, tumors in the pituitary gland or adrenal adenomas.

Both Ms. Edwin and Ms. Jordan have Cushing’s syndrome and they describe the varying symptoms and specialists they experienced leading up to their Cushing’s syndrome diagnosis. Proper diagnosis is essential for Cushing’s syndrome because of its various causes that may need to be treated differently.

Patient advocacy organizations, like the CSRF, provide helpful resources and support from an understanding, patient-led community. Visit their website here: Cushing’s Support and Research Foundation

To learn more about Cushing’s syndrome and other rare endocrine disorders, visit https://checkrare.com/diseases/endocrine-disorders/