West Papuan woman with neurofibromatosis given new lease on life thanks to Sydney surgeons

A West Papuan woman has gone under the knife in Australia to remove benign facial tumours after spending a lifetime struggling to eat, drink and speak.

Natalia Apaseray.

Natalia Apaseray. Source: SBS News/Aneeta Bhole

A group of Australian medical experts and volunteers have rallied together to provide life-changing surgery for West Papuan woman Natalia Apaseray.

Ms Apaseray has neurofibromatosis - a rare genetic condition that causes tumours to form in the brain, spinal cord and nerves.

And, after five months of surgeries at Liverpool Hospital in Sydney, she says the support she's received has been overwhelming.

Natalia Apaseray.
Natalia Apaseray. Source: SBS News/Aneeta Bhole

Neurofibromatosis affects about one in 3000 Australians, but it is often detected early and treated at a young age.

For Ms Apaseray, this wasn't the case - as she didn't have access to appropriate medical facilities.

Ms Apaseray said while growing up in West Papua's largest city Jayapura she felt a lot of shame because of her facial deformities.

She still has to wear a mask because of the swelling.
She still has to wear a mask because of the swelling. Source: SBS News/Aneeta Bhole

While she still has to wear a mask to stop the swelling from her surgery, she said she no longer feels the need to hide her face.

"I will be happy to go back and see my community in Jayapura," she said.

Ms Apaseray has been living with Jim Rudling and her friend and carer Ema.

Natalia Apaseray and Jim Rudling.
Natalia Apaseray and Jim Rudling. Source: SBS News/Aneeta Bhole

Mr Rudling is part of the Liverpool West Rotary club who helped raise $27,000 to bring Ms Apaseray to Australia for the procedure.

"Incredible, absolutely incredible, to see what Natalia looked like when she first arrived here in Australia and to see her today ... it's very very heartening'," he said.

Surgeons helping in the procedure said it's the first time they've seen a case this extreme for someone Ms Apaseray's age.

Michael Kernohan
Michael Kernohan. Source: SBS News/Aneeta Bhole

"You see them regularly in clinics but those are small nodules, and that's the minor form of the disease," Plastic surgeon Michael Kernohan said.

"There are a proportion of people that get a very severe form of it, and Natalia would be the most severe that I've seen."

Photo credits in video: Luke Fuda/South Western Sydney Local Health District


2 min read

Published

Updated

By Aneeta Bhole



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