I used to be robbed of my 30s by a illness medical doctors missed for years
Ania Stepien dreamed of getting married and becoming a mum one day but was ‘robbed’ of her 30s after being diagnosed with a rare disease.
She was fit, healthy and active but at 31 started experiencing strange symptoms that seemingly appeared ‘overnight’.
She suffered from open wounds on her face that wouldn’t heal, excessive and rapid weight gain, facial changes and extreme fatigue.
The symptoms were brushed off by doctors constantly between 2014 and 2019, leaving the young Sydney woman increasingly frustrated and feeling as though she was ‘going to die’.
Finally, four years later, Ania was diagnosed with Cushing’s disease after an MRI found a 6mm tumour growing in the pituitary gland of her brain.
Cushing’s disease is a condition that occurs when the body produces too much cortisol for a long period of time. While the disease occurred because of her tumour, 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 tumour was surgically removed she suffered another cruel blow and was paralysed from adrenal insufficiency as her body wasn’t producing enough cortisol.
Ania Stepien (pictured) was diagnosed with Cushing’s disease at 35 after searching for answers for for years
The symptoms were brushed off by doctors constantly between 2014 and 2019, leaving the young Sydney woman increasingly frustrated and feeling as though she was ‘going to die’
‘Cushing’s is a one in a million disease, and there’s no test for it,’ Ania claimed, who is studying a master’s of journalism with major work dedicated to researching cortisol and the ‘huge misconceptions’ circulating online.
‘I could barely walk, I couldn’t breathe, you feel like you’re losing your mind. It’s like you know you’re dying but everyone thinks you’re crazy. So I got a second, third, fourth opinion from different doctors,’ she said.
Ania also gained 30kg in three months and went from a size six to 14. Her face swelled so much that she was unrecognisable.
Over the next four years, Ania’s health declined further, with the disease robbing her of her ability to think clearly or perform basic daily tasks such as making a 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 tumour growing in the pituitary gland of her brain (before and after pictured)
Ania admitted herself to the emergency department at her local hospital and demanded a doctor listen to her and look at her debilitating symptoms. It was there that doctors finally start taking her seriously.
She met with doctor and researcher for pituitary tumours, endocrinologist Associate Professor Ann McCormack, who diagnosed her on the spot.
‘She took one look at me and said “I think you might have Cushing’s”. So I had a brain scan and I taught myself how to read the images before they found the tumour,’ Ania recalled.
‘When I saw the tumour I thought “thank God” because I was finally getting some answers – but it was just one piece of the puzzle.’
Shortly after being diagnosed Ania had surgery to remove the tiny tumour in her brain that was causing her ongoing suffering. Before she went in she also made the decision to freeze her eggs.
Ania, now 41, had surgery to remove the tumour which was successful but she was left with adrenal insufficiency as the body was no longer producing enough cortisol on its own
‘I was excited to have surgery because I thought this nightmare was going to end,’ she said.
While it was successful, she was left with adrenal insufficiency as the body was no longer producing enough cortisol on its own.
While this is a common outcome and typically lasts for around nine months, Ania was impacted for a staggering four and a half years.
This lead to severe symptoms including paralysis, extreme nausea, vomiting, and an ‘inability to function’ day to day.
‘With Cushing’s I could still move, but with the adrenal insufficiency I was in bed all day, my brain didn’t function properly, I couldn’t drive, I felt like I lost everything,’ she said.
‘I’m terrified of having another operation now.’
‘With Cushing’s I could still move, but with the adrenal insufficiency I was in bed all day, my brain didn’t function properly, I couldn’t drive, I felt like I lost everything,’ she said
The symptoms continued until one day her pituitary gland ‘woke up’ and she sprung out of bed with energy.
‘I walked everywhere and was healthy for nine months – I even walked across whole of Spain within three months,’ Ania said.
Now her cortisol levels vary but she is able to work full time and catch up with friends but doesn’t exercise.
‘I’m currently going through a reoccurrence so just gained 15 kilos (again) within a month but it is not yet “bad”,’ she said.
Research has found 50 per cent of recurrences occur during the first 50 months after first surgery. There are a variety of treatment options that include a second surgery, pituitary radiation and targeted medical therapy to control hypercortisolism.
Looking back, Ania is devastated that wasn’t able to start a family or meet the man of her dreams because she was sick for years.
‘I had to move back home to my parents. I’ve always wanted a child, but I’m 41 what do I do about it? There’s also questions around how sick I might get and if it’s fair to bring up a child like that,’ she added.
‘When you’re sick, you lose basically everything, and nothing really matters because you’re so unwell that you just want to go back to your normal life. My biggest dream was going back to the time when I wasn’t sick.’
To this day doctors aren’t sure if 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 the best so always get second, third, or fourth opinion. Educate yourself but use credible sources – and don’t rely on TikTok or influencers because there’s no much miscommunication about Cushing’s and cortisol,’ she said.
