Guarded by a nurse 24 hours a day, Amanda Murphy’s behaviour regularly oscillates between that of a giggling little girl to a vague shell of a woman who spends hours staring at the wall.
As one of only seven Australians believed to be diagnosed with the rare, gruesome and bizarre condition known as ovarian teratoma encephalitis, Amanda’s behaviour is both disturbing and erratic.
And she might never completely recover.
On Christmas night Amanda, 26, (pictured) , was admitted to the John Hunter Hospital complaining of pressure in her head. A lumbar puncture confirmed she had encephalitis.
Further tests revealed a horrific teratoma containing hair, teeth and brain tissue – but which was not a foetus – on her ovaries.
The tumour caused Amanda’s body to develop antibodies which have attacked, not only the brain cells inside the tumour, but also the cells inside Amanda’s brain. As a result, Amanda has slipped into a psychosis.
“The tumour has been removed but Amanda is still fighting the encephalitis,” her sister Rachel, 24, of Telarah, said.
“She’ll be in hospital for at least another three months but we still don’t know if she’ll be OK. There is a 90 per cent chance she will recover but we don’t know how much damage has already been made or whether we’ll get our old Amanda back.”
In 2005, a syndrome of memory deficits, psychiatric symptoms, decreased consciousness and hyperventilation was reported in four young women with ovarian teratomas.
Two years later the disorder was identified by professor of neurology at the University of Pennsylvania Josep Dalmau.
Reports claim there are only 30 confirmed cases of ovarian teratoma encephalitis in the world.
“The teratoma can disguise itself as a cyst or a foetus and when the doctors dissected Amanda’s tumour they found hair, teeth and brain tissue,” Rachel, of Telarah, said.
“We saw photos of the tumour inside and out and it was horrible. It’s hard to believe this is happening.”
Amanda has been given approval to receive a $33,000 drug to support her immune system while she fights the encephalitis.
“She basically has no immune system whatsoever because she’s been fighting this horrible thing,” Rachel said.
Amanda remains in the care of a nurse 24 hours a day and aside from her psychosis, her heart races and she struggles to sleep.
“She slept 16 hours in eight days during the first two weeks because her brain was so agitated and she has ripped out cannulas and drips,” Rachel, 24, said.
“Basically it’s different every time we walk in there. You don’t know who she is going to be or what she is going to be.
“Sometimes she is a child who wants her sissy and her mummy, it’s like talking to a little girl and she is relying a lot on memory.
“Some days you laugh other days you cry. She can’t comprehend anything.”
The Murphy family has decided to share their story in an effort to create awareness.
“More people need to know about this horrible thing,” Rachel said.
“Amanda had a life and she had just bought a house with her partner. It’s almost like she started life and it finished before she had a chance.”
The name teratoma is derived from the Greek word for monster.