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'An extreme facelift' – inside the debilitating genetic condition neurofibromatosis

November 3, 2018

Janet McIntyre leads a Sunday investigation into a woman who has her face peeled off to mitigate the effects of the condition.

Christine Brown is about to have her face peeled off and she's relaxed.

"Any fear?" I ask. "No fear, I'm used to it." She's an old hand at having surgeons digging into her cheeks trying to erase the effects of a debilitating genetic condition called neurofibromatosis.

She had the first of many operations on her face when she was just seven and sadly, some of her warmest childhood memories are of being on hospital wards. "My happy place", she reflects, smiling on her good side. It's where she felt safe - comforted by nurses and free from bullies who made her life hell.

It's hard to imagine the cruelty she's endured: she's been spat on; vomited on; had faeces thrown at her; and her flesh torn with long nails. At 13, she considered hanging herself. Later, she struggled to get jobs and was once told by a potential employer she was too ugly to be seen in public.

It's the words that have hurt her the most. "They stick in your heart", says Christine. They're more painful than the physical abuse and any of the operations she's had on her face.

But they might help explain her resilience. Here she is, breezily facing operation number 19. She's just about to be wheeled into theatre and she’s craving bacon and eggs.

"An extreme facelift", is the way head and neck surgeon Matthew Leaper describes it. Plus, for the first time, doctors are going to try to give Christine a cheekbone - to put structure in her face where she's never had it. They'll take a piece of her calf bone, sculpt it into a nice curve and screw it into her skull.

It's big stuff. The surgeons have never attempted an operation as complex as this. I watch her face being peeled back, revealing a gory record of her past. Vital muscle has been stripped away. There's a random screw in Christine's eye socket the surgeons can't explain. The tissue is weak from her condition. "It's like sewing jelly", Dr Leaper tells me as he works.

What this surgery also reveals is extraordinary courage and tenacity. Christine is simply seeking what most of us take for granted - a normal face. Here she lies, unconscious for 16 hours, as naked and vulnerable as she could possibly be, her outcome unknown. But a pulse pops out of her bloody temple. It's bold, even and sure - and defies the five decades of bullies who've tried to crush her.

- By Janet McIntyre

Watch The Bravest Face (minus graphic surgery) Sunday 7.30 tonight TVNZ1

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