Cushing’s Syndrome: A Patient Advocate Perspective

Jessica Behrend, RN, MSN, FNP-BC

Jessica is one of Corcept’s Patient Advocates. In this role, she offers support to people with Cushing’s syndrome.

“To say that I am honored to support patients with Cushing’s is an understatement. I am proud to serve as a resource for patients, with the opportunity to offer education and support for understanding and managing their illness and to be a safe place to speak openly about their experiences.”

April is Cushing’s Awareness Month. What is Cushing’s syndrome?

Cushing’s syndrome, also known as hypercortisolism, stems from excess cortisol activity and can derail a person’s metabolism. It is a systemic, pervasive syndrome that can commandeer a person’s well-being.

What symptoms do people with Cushing’s syndrome typically experience?

Not every person suffering from Cushing’s manifests every symptom known to be associated with it. A very challenging aspect of the syndrome for patients and healthcare providers alike is the individual variability of onset and symptoms. It can manifest as an insidious unfolding of symptoms over years, or wreak havoc on a person’s health in frighteningly short order. 

There is a heartbreaking theme among Cushing’s patients of feeling like they don’t recognize themselves due to devastating physical and psychological symptoms. Whatever the combination of symptoms, people tend to suffer in mind, body, and soul.

What stands out to you as the most challenging part of the patient journey?

Many people have shared stories of long, invalidating journeys toward diagnosis, even when presenting lists of symptoms consistent with Cushing’s. One of the most challenging parts for patients is that many healthcare providers do not initially recognize the syndrome. 

I often hear patients say they are simultaneously frightened and elated once they finally receive a Cushing’s diagnosis: they learn they have a syndrome affecting multiple body systems, but they actually have a diagnosis and finally feel heard.

In sharing details of their painful healthcare journeys to diagnosis and of the symptoms they endure, they are truly opening their lives. I value their candor and vulnerability and gratefully lend a compassionate ear.

At Corcept, we are exploring how cortisol modulation may benefit people with Cushing’s Syndrome. Jessica is a long-time member of our Patient Advocacy team, a group of employees dedicated to providing education and support to people with Cushing’s. 

Published April 1, 2024