When new mother Katelyn Bonacasa noticed a bumpy red rash shortly after childbirth, she thought it was a minor issue. The rash disappeared quickly after a visit to a dermatologist. However, in the following weeks, more alarming symptoms started to emerge—and they persisted.

‘My face became completely round, losing its definition,’ recounts Katelyn, 30, from Long Island, New York. ‘It was constantly red and burning hot, and then my hair started to fall out.’

Katelyn lost nearly a third of her hair, while coarse new hairs began to grow across her face from her forehead to her chin. She experienced acne breakouts, her skin bruised easily, and even minor cuts took an unusually long time to heal.

‘I was unrecognisable,’ she said.

‘I rapidly gained 30lbs, felt fatigued to the point of not being able to keep my eyes open, yet I struggled with insomnia. I was anxious, depressed, and constantly irritable. It felt like I was going insane.’

Katelyn’s menstrual cycles stopped, her thyroid appeared to be enlarged, and blood tests revealed she was developing insulin resistance—an indicator that her body was struggling to process sugar, which could potentially lead to diabetes.

Yet for eight months, doctors dismissed her concerns.

‘I couldn’t even get a sentence out before my first endocrinologist interrupted me to say, ‘You’re fine’,’ she said.

Katelyn Bonacasa,30, suffered from a swollen face acne and her hair falling out 

The mother was eventually diagnosed with Cushings disease

Her doctor suggested it was likely postpartum-related. He performed a basic thyroid test, without a comprehensive examination, and noted in his records, ‘no suspicion of anything’.

Another doctor brushed off her skin changes as adult acne. A specialist even told her to try running on a treadmill. ‘These things are normal as a woman,’ one endocrinologist told her flatly.

But Katelyn knew something wasn’t right. Determined to find answers, she began researching her symptoms.

The more she read, the more convinced she became that she had Cushing’s disease—a rare hormonal disorder caused by prolonged exposure to high levels of cortisol, the so-called stress hormone.

Tests confirmed her suspicion. Her cortisol levels were three to four times higher than normal.

A 24-hour urine test came back at 720—when the healthy range is between 3 and 45. ‘From the very first time I had blood work done, I never once had a normal cortisol reading,’ she said. ‘That’s when I knew it had to be Cushing’s.’

Cushing’s disease is usually triggered by a benign (non-cancerous) tumour on the pituitary gland—a pea-sized structure at the base of the brain which acts as the body’s hormonal control centre.

The tumour causes the gland to pump out excess adrenocorticotropic hormone (ACTH), which in turn stimulates the adrenal glands above the kidneys to flood the body with cortisol.

Tests revealed she had high levels of the stress hormone, cortisol 

While cortisol is essential in small doses—regulating blood pressure, blood sugar, metabolism and the immune response—sustained high levels wreak havoc.

Patients often experience rapid weight gain concentrated around the trunk, while the arms and legs remain thin. The face becomes rounded—the classic ‘moon face’—and fat can build up between the shoulders to form a ‘buffalo hump’.

Skin thins and bruises easily, purple stretch marks appear across the abdomen, and hair growth changes. Muscles waste away, leaving profound weakness.

Excess cortisol also affects mood and memory, raising the risk of depression, anxiety and even psychosis. Blood pressure soars, insulin resistance develops and patients may go on to develop full diabetes.

Bones weaken, leaving them vulnerable to fractures. Left untreated, the disease can be fatal.

Part of the problem, experts say, is that symptoms can mimic common conditions such as polycystic ovary syndrome, menopause or simple post-pregnancy changes.

The disease is rare, affecting just one to two people per million each year. Many doctors may only see one or two cases in their entire careers.

Professor Ashley Grossman, an endocrinologist at the University of Oxford, explains: ‘Cushing’s can be difficult to diagnose because many of the features—weight gain, mood changes, acne—are so common. But when they occur together, and in a relatively short space of time, it should raise a red flag.’

For Katelyn, the delay in diagnosis was devastating. ‘The hardest part was watching how everything kept getting worse and just hoping it would be reversible one day,’ she said.

A brain scan eventually revealed a 1.5cm tumour on her pituitary gland. In a delicate operation through her nasal cavity, surgeons removed it. 

 Most patients respond well to surgery, though some require medication to suppress cortisol or, in severe cases, removal of the adrenal glands. 

Recovery can be slow: it may take months or even years for cortisol levels to return to normal and for the body to heal.

Today, Katelyn is in recovery and shares her story on TikTok, reaching thousands with videos about her symptoms, diagnosis and the dismissals she faced. 

‘I was the one who connected the dots and pushed for the right tests,’ she said. 

‘A 1.5cm pituitary tumour absolutely wrecked me. Nothing will humble you more than living as a version of yourself you don’t recognise. But this too shall pass—it gets better.’

Since posting her videos, Katelyn has received hundreds of messages from people worried they may have similar symptoms. 

‘It makes me sad that people have to dig through external sources and fight so hard for answers when something as simple as a blood test could change everything,’ she said.

Experts stress that while Cushing’s disease is rare, it should be considered in patients who present with the tell-tale cluster of features. 

‘If you have rapid, unexplained weight gain, thinning skin and bruising, irregular periods and psychological changes, it is important to ask your GP for comprehensive hormone testing,’ says Professor Grossman. 

‘A simple blood or urine test can give the first clue, and early diagnosis makes treatment much more effective.’

The red-flag symptoms include rapid weight gain around the trunk and face, thinning skin, purple stretch marks, easy bruising, hair growth on the face and body, muscle weakness, fatigue, depression, anxiety, high blood pressure and diabetes. 

Although rare, the condition can be life-threatening if left untreated.

Katelyn says she is determined to raise awareness so other women don’t suffer in silence as she did.

‘I trusted myself, and that’s what saved me,’ she said. ‘For months I was told it was all in my head. But I knew my body, and I kept pushing. If my story helps just one person get diagnosed earlier, it will have been worth it.’