Tanja Dittfeld was fit, healthy and living the dream this year having moved from Denmark to Australia as part of her PhD studies.
But when she went to the doctor with ‘fuzzy’ eyesight in October, the social change and social work student never expected them to later find a 2.2cm tumour on the pituitary gland in her brain.
Just over a week later on November 3 she received another devastating blow when she was diagnosed with Cushing’s Syndrome, a rare hormonal condition caused by the tumour, which has left her with blurred vision, fatigue, bodily weakness, headaches, muscle loss and a ‘hunch’ in her back.
Speaking to FEMAIL, Tanja, 35, said if she had known about the growth earlier she wouldn’t have moved as she is now stranded away from family and requires urgent treatment.
Normally pituitary tumours are smaller than 1cm but Tanja’s is more than twice that size; it has caused excess production of the stress hormone cortisol which has left her constantly in ‘fight or flight mode’ and ‘unable to unwind’.
Her neurosurgeon strongly advised against returning home as the pressure from a flight could cause the tumour to burst and may cause blindness – so she made the difficult decision to stay in Australia.
She required emergency surgery on November 15 to prevent possible brain damage and permanent blindness. Doctors believe the tumour is benign but won’t know for sure until a biopsy is conducted.
The rare Cushing’s Syndrome has left her with ‘hard hitting’ symptoms and she describes her vision as feeling ‘like having butter smeared on both eyes’.
‘It’s really hard to see which makes reading and navigating hard,’ she said.
Cushing’s can be fatal if left untreated and surgery is the first resort to remove the tumour followed by any necessary medication.
What is Cushing’s disease?
Cushing syndrome happens when the body has too much of the hormone cortisol for a long time.
Too much cortisol can cause some of the main symptoms of Cushing syndrome – or Cushing’s disease – causing a fatty hump between the shoulders, a rounded face, and pink or purple stretch marks on the skin.
Treatments for Cushing syndrome can lower the body’s cortisol levels and improve symptoms. The sooner treatment starts, the better the chances for recovery.
Source: Mayo Clinic
At the start of 2023 she suffered from vision impairment in one eye and visited an ophthalmologist in Denmark who told her she had ‘dry eyes’.
It wasn’t until she saw an ophthalmologist in Sydney that the word ‘tumour’ was uttered as a possibility.
‘I’m incredibly anxious.. what if something goes wrong or I lose my eyesight? It’s brain surgery and there will be a hard recovery later,’ Tanja said ahead of her surgery.
‘I’m horrified at the possibility of what could happen but I know it’s necessary. It’s a catch 22 situation.’
The scary scenario led three close friends to set up a GoFundMe campaign for her.
Cushing’s is nonhereditary and the cause of the tumour remains unknown.
While pituitary tumours very rarely spread to other parts of the body, the macro size of Tanja’s tumour sparked immediate concerns from doctors.
Around one in five Australian (10-20 per cent) have a pituitary tumour, most of which are small. But this isn’t the case for Tanja.
Cushing’s makes the removal of the tumour complicated because it causes the cells to become sticky and recurrence is higher.
‘As devastating as it was to be diagnosed, it was also a relief being provided an explanation,’ she said.
‘Since then I haven’t had a moment to myself to sit with my feelings – not a day or even an hour – I’ve been constantly tied up with appointments and meetings.
‘I haven’t had any time to process the diagnosis and I’m more stressed now than ever before coping with everything, which only elevates the cortisol levels making Cushing’s and the tumour worse.
‘I only sleep one to two hours a night, I’ve lost most of my hair, and vision impairments have gotten worse.’
Tanja also described Australia’s healthcare system as ‘broken’ as she believes everyone should be given the right to integrated healthcare.
She also gets by with a modest $26,600 stipend scholarship from the University of Sydney where she also teaches to supplement her income.
After just five days 360 donations were made and more than $36,000 has been raised to cover half the cost.
‘It’s been overwhelmingly heartwarming and I’ve felt really humbled,’ she said.
The surgery and hospitalisation alone costs $43,590.
Any extra money raised will be donated to the Pituitary Foundation Australia to help other patients with pituitary tumours.