Help Tanja beat her brain tumour

We are friends fundraising to cover the costs of Tanja's emergency brain surgery and treatment for Cushing’s disease.

Tanja is 35 and grew up in Denmark. She is pursuing her PhD at the University of Sydney where she is also tutoring in social policy studies and social work.

For more than 10 years, Tanja has fought against inequalities and advocated for human rights of marginalised communities such as sex workers in Thailand, people living with disabilities in Zambia, as well as adolescents and LGBTQ+ people in Uganda, especially related to HIV/AIDS and sexual and reproductive health and rights.

Tanja’s PhD on queer activisms in Uganda is an extension of her activism and advocacy work. She moved to Australia in 2018 to start her PhD and was conducting field work in Uganda in early 2020 when Australia closed its international borders for almost two years. As a result she had to suspend her PhD, return to Denmark, and work until Australia opened its borders and her study visa could be renewed. She then returned to Sydney as soon as possible in 2023 to resume her PhD. Now she is fighting not only a brain tumour and Cushing’s disease but for access to medical care.

Need for emergency surgery

On 23 October 2023, Tanja received the devastating news that she has a large pituitary tumour, meaning at the base of the brain (behind the nose). The function of the pituitary can be compared to that of a household thermostat as it constantly monitors bodily functions and sends signals to remote organs and glands to monitor their function and maintain the appropriate environment.

A tumour of this kind is normally less than 1 cm in size, whereas Tanja’s is 2.3 cms. The tumour is already causing severe symptoms, including visual impairments in both eyes, headaches, and vertigo. Left untreated it could cause permanent brain damage and lead to blindness.

Shortly after, she received a diagnosis of Cushing’s disease. This rare condition stems in her case from the tumour causing an excess production of cortisol. Tanja’s symptoms include severe visual impairments, extreme fatigue, difficulties in concentration, and bodily weakness. Left untreated, Cushing's can be fatal, and surgery is the first line of treatment followed by medication.

Because of the severity of her combined conditions, Tanja's neurosurgeon deems surgery urgently needed and has scheduled it for 15 November 2023.

As if these two intertwined diagnoses weren't enough, Tanja was hit with another blow. On 3 November 2023, she received the message from her insurance provider, Allianz, that the health insurance provided by the University of Sydney would not cover the brain surgery or any associated costs. This is because she is within the twelve-month waiting period following her university's reinstatement of her insurance upon resumption of her PhD.

Thus, given that she requires urgent surgery and that the wait time for surgery in the public health system is lengthy, she will have to pay the full amount for this life-saving surgery at a private hospital, along with follow-up rehabilitation costs.

In addition, Tanja's neurosurgeon has strongly and repeatedly advised against flying, so going back to Denmark for treatment is not an option for Tanja. Flying could make the tumour burst.

How did this happen?

Tanja suffered from visual impairments at the beginning of 2023 and thus went for a consultation with an ophthalmologist in Denmark, where she was based at the time. He dismissed her with a diagnosis of dry eyes even though her referring Danish optometrist had already estimated a visual loss of 80% on the right eye and was fearful that she was going acutely blind.

It was not until Tanja saw an ophthalmologist in Sydney in October 2023 that the suspicion of a tumour was ever mentioned. We know now that Tanja is finding herself with a life-threatening brain tumour and Cushing’s disease.

A broken system

Tanja is highly independent and resourceful, but she finds herself in an impossible situation. No one wants to have to fund their own brain surgery. But for her as an international student in Australia, the system is broken.

As a PhD student living in Australia’s most expensive city, Tanja shares an apartment with two other people. She gets by with an extremely modest $26,600 stipend scholarship from the University of Sydney where she also teaches to supplement her income. Nor is Tanja eligible for Medicare, available only to citizens and permanent residents, which would reduce the cost of some treatments.

In the unlikely event that the fundraiser reaches beyond its goal or if Tanja’s appeals for a reversal of her health provider’s decision is successful, any extra money will be donated to the Pituitary Foundation Australia to help other people with pituitary tumours.

Every donation counts

Put simply, Tanja requires urgent surgery which her health insurer will not cover at present, while the waitlist for surgery through the public health system is longer than her doctors' recommended timeframe.

She is relying on the generosity of family, friends, and strangers.

Whether it’s $5, $25, $50 or more, your donation will count.

The breakdown of costs

The list is incomplete, so additional costs will be added as they are received.

Diagnosis = $2,960

Surgery and hospitalisation = $43,590

Treatment = $2,650

As an indication, Tanja requires three MRIs in total: one to confirm the tumour, the second a day after surgery, and the third would be 2-3 months after surgery. The first MRI at Royal Prince Alfred Hospital cost Tanja $425 out of her own pocket. However, through the private system, the subsequent MRI costs would be $840-$900 each. Her first consultation with the neurosurgeon cost $450, with the endocrinologist $440, and the ophthalmologist $520. Her appointment with the ENT surgeon will cost $720.

Further, we would need to account for GoFundMe's fees.

Tanja’s situation is putting a spotlight on the precarious and unfair conditions international students are finding themselves in when it comes to access to health care in Australia. Tanja hopes that besides covering the costs of her brain surgery, this fundraiser can raise discussion about the many other students who are left out.

For further information on pituitary tumours, click on this link

For further information on Cushing's disease, click on this link