Ania Stepien dreamed of getting married and becoming a mother one day, but her 30s were “stolen” from her after she was diagnosed with a rare disease.
She was fit, healthy and active, but at age 31 she began experiencing strange symptoms that seemingly appeared “overnight.”
She suffered from open wounds on her face that would not heal, excessive and rapid weight gain, facial changes, and extreme fatigue.
Between 2014 and 2019, doctors consistently ignored her symptoms, leaving the young Sydney woman increasingly frustrated and feeling like she was “going to die”.
Finally, four years later, Ania was diagnosed with Cushing’s disease after an MRI scan detected a 6mm tumor growing in the pituitary gland of her brain.
Cushing’s disease is a condition that occurs when the body produces too much cortisol over a long period of time. While the disease occurred because of his tumor, the cause of the growth is unknown.
“This disease cost me my health, my job, my relationship and even my mind,” Ania, now 41, told FEMAIL.
Even after the tumor was surgically removed, she suffered another cruel blow and was left paralyzed by adrenal insufficiency as her body did not produce enough cortisol.
Ania Stepien (pictured) was diagnosed with Cushing’s disease at age 35 after searching for answers for years.
Doctors consistently ignored her symptoms between 2014 and 2019, leaving the Sydney native increasingly frustrated and feeling like she was “going to die”.
“Cushing’s syndrome is a once-in-a-million disease and there is no test for it,” said Ania, who is pursuing a master’s degree in journalism and whose main job is researching cortisol and the “massive misconceptions” that circulate online.
“I could barely walk, I couldn’t breathe, I felt like I was losing my mind. It was like I knew I was dying but everyone thought I was crazy. So I got a second, a third, a fourth opinion from different doctors,” she said.
Ania also gained 30kg in three months and went from a size six to a size 14. Her face became so swollen that she was unrecognisable.
Over the next four years, Ania’s health deteriorated further and the disease robbed her of the ability to think clearly or perform basic everyday tasks like making coffee.
She suffered from open wounds on her face that wouldn’t heal, excessive weight gain “overnight,” facial changes, and extreme fatigue. Four years later, an MRI found a 6mm tumor growing on the pituitary gland of her brain (before and after photo)
Ania checked herself into the emergency room at her local hospital and demanded that a doctor listen to her and examine her debilitating symptoms. It was there that doctors finally began to take her seriously.
She met with pituitary tumour researcher and endocrinologist Associate Professor Ann McCormack, who diagnosed her immediately.
“He looked at me and said, ‘I think you might have Cushing’s syndrome.’ So I had a brain scan and learned how to read the images before they detected the tumor,” Ania recalls.
“When I saw the tumor I thought ‘thank God’ because I was finally getting some answers, but it was just one piece of the puzzle.”
Shortly after being diagnosed with the disease, Ania underwent surgery to remove the small brain tumor that was causing her constant suffering. Before the operation, she also made the decision to freeze her eggs.
Ania, now 41, underwent successful surgery to remove the tumour but was left with adrenal insufficiency because her body was no longer producing enough cortisol on its own.
“I was excited about the surgery because I thought this nightmare was going to be over,” she said.
Although successful, she suffered from adrenal insufficiency because her body was no longer producing enough cortisol on its own.
While this is a common outcome and usually lasts around nine months, Ania was affected for a staggering four and a half years.
This led to severe symptoms including paralysis, extreme nausea, vomiting and an “inability to function” on a day-to-day basis.
“With Cushing’s I could still move, but with adrenal insufficiency I was in bed all day, my brain wasn’t working properly, I couldn’t drive, I felt like I had lost everything,” she said.
“I’m afraid I’ll have to have another operation now.”
“With Cushing’s I could still move, but with adrenal insufficiency I was in bed all day, my brain wasn’t working properly, I couldn’t drive, I felt like I had lost everything,” she said.
The symptoms continued until one day her pituitary gland “woke up” and she jumped out of bed with energy.
“I walked everywhere and was healthy for nine months; I even walked across Spain in three months,” Ania said.
Now her cortisol levels fluctuate, but she can work full time and hang out with friends, but she doesn’t exercise.
“I’m currently going through a relapse, so I just gained 15 kilos (again) in a month, but it’s still not ‘bad,'” she said.
Research has shown that 50 percent of recurrences occur within the first 50 months after the first surgery. There are a variety of treatment options including a second surgery, pituitary radiation therapy, and targeted medical therapy to control hypercortisolism.
Looking back, Ania is devastated that she was unable to start a family or meet the man of her dreams because she was sick for years.
“I had to move back in with my parents. I’ve always wanted to have a child, but I’m 41 now. What do I do about it? There are also questions about how sick I might get and whether it’s fair to raise a child like that,” she added.
“When you’re sick, you lose almost everything and nothing really matters because you’re so sick that all you want is to get back to your normal life. My biggest dream was to go back to the time when I wasn’t sick.”
To this day, doctors are not sure whether the disease will return completely or not.
Now Ania is fighting for more funding for Australia’s only research group dedicated to pituitary tumours.
“You know your body best, so always get a second, third or fourth opinion. Get informed, but use credible sources and don’t trust TikTok or influencers, because there’s a lot of confusion about Cushing’s syndrome and cortisol,” she said.
