(BPT) - Liz's passion for healthcare has always been personal. Diagnosed with type 1 diabetes at age 10, Liz's earliest interactions with her care team inspired her to become a nurse practitioner. For eight years, she worked as a nurse practitioner in the Philadelphia area, helping patients like her navigate life with diabetes.
When changes unrelated to her diabetes began taking over her life — weight gain, intense hunger, fatigue, physical weakness — Liz and her husband Sarab, an emergency medicine physician, didn't consider that an underlying condition might be to blame. There was an easier explanation: Liz had recently given birth to her second son, and the exhaustion of balancing a career with an infant and a toddler made the symptoms easy to explain away. But as the months went on, the fatigue deepened into something far more debilitating.
A Heavy Toll on Family and Health
Liz's symptoms gradually progressed to the point where she didn't have the strength to get up from the living room floor after playing with her children. "I needed to crawl to the couch to help pull myself up," Liz recalls. "With this disease, you're exhausted. You're trying to balance a lot while not being able to physically and mentally live your life. It's challenging, and it's terrible."
Her symptoms also began to take a toll on her mental health. She wrestled with intense anxiety, depression and irritability. "I felt like I was losing myself," Liz says. At the same time, her diabetes management started to become a losing battle — Liz couldn't stabilize her blood sugar and her daily insulin requirements skyrocketed to over 100 units a day, double what she normally needed.
For Sarab, watching his wife suffer while being unable to provide any answers was heartbreaking. "The reality was, my wife wanted to do everything for our family, but she physically couldn't," he shares. Sarab stepped in to help manage more of the household and care for their young boys when Liz was physically exhausted, all the while, relying heavily on extended family support.
Despite multiple visits to specialists, including neurologists, endocrinologists and psychiatrists, Liz's worsening health was repeatedly dismissed as postpartum depression, sleep deprivation or simply the stress of being a working mother. "I was told I just needed to take better care of myself," she says.
Putting the Puzzle Pieces Together
The turning point came when Liz took a step back and looked at the full range and impact of her symptoms — the muscle weakness, weight gain, acne, hair loss and dramatic mood changes. Suddenly, she realized she was looking at the full picture of Cushing's syndrome. All the individual pieces were there, but nobody took a step back to see the bigger picture.
When she first brought her suspicions to colleagues, she initially faced skepticism due to the rarity of the disease. Cushing's syndrome, also known as hypercortisolism, occurs when the body is exposed to excess levels of the stress hormone cortisol over a long period of time. It's often caused by a tumor on the pituitary or adrenal glands. Because its symptoms overlap with common conditions like type 2 diabetes, polyendocrine metabolic ovarian syndrome (previously known as PCOS) or depression, it's frequently overlooked.
Liz continued to advocate for herself, and with the help of supportive colleagues, secured the necessary screening tests. When the results came back "off the charts" for elevated cortisol, she was quickly referred to a pituitary specialist.
"While my technical diagnosis only took a few months once we started putting the pieces together, looking back, I think I was actually experiencing mild symptoms for almost a decade without realizing it," Liz reflects.
The contrast between her diabetes diagnosis as a child and her Cushing's journey as an adult was stark. "With diabetes, there's an established system, support groups and clear educational guidelines," Liz explains. "With Cushing's, I floundered looking for resources and could find no real road map. It makes you feel lonely and lost with no place to go."
Turning Lived Experience into Advocacy
After recovering, Liz channeled her physical and emotional struggles into a new professional purpose. She left clinical practice to join Corcept Therapeutics, a company focused on unlocking the potential of cortisol modulation to transform the treatment of serious diseases, and she now educates healthcare providers about Cushing's syndrome, sharing scientific data and raising awareness about the importance of early testing.
"We need more awareness. We need more advocacy. And we need more acceptance," Liz says. "If we can help clinicians put those puzzle pieces together earlier, we can change a patient's entire life trajectory. They don't have to lose years of their lives quietly suffering hoping for an answer."
If you suspect you may have hypercortisolism or symptoms of Cushing's syndrome, including hard-to-control diabetes, rapid weight gain, severe fatigue, muscle weakness, high blood pressure or mood changes, talk to your doctor. To learn more about Cushing's syndrome or find a specialist near you, visit http://www.cortisolincontrol.com/find-a-specialist.com.
This article is the experience of one person and is not medical advice. Consult a medical professional for medical advice, diagnoses, or treatment.
