In May, Newshub met a young Kiwi woman who feared she would die by the age of 25 because specialists in New Zealand couldn't treat her rare health condition.
Aimee Dear has Ehlers-Danlos syndrome, a genetic connective tissue disorder that can be fatal, and after years of not being taken seriously and being in intense pain, she headed to Germany for surgery and treatment.
Her surgery was a success and she's now recovering at home.
For years, Aimee couldn't eat anything without throwing up, even something like a small bowl of food. Eventually she was fed through a tube.
But after her life-saving surgery, the 20-year-old relishes her meal times.
"Pre-surgery I was very vocal I wanted a cheeseburger, post-surgery that was my go-to. But turns out post-surgery all I wanted was fruit and fresh food but it was the best fruit I have ever had, so it was amazing, it was so euphoric to eat again," she told Newshub.
Before her surgery, Aimee was tube-fed, fainting, exhausted, and suffering multiple daily joint dislocations. Her future was grim.
"I feel like if I stayed in New Zealand, I wouldn't have very long. From what I have heard people with this severity don't seem to make it past 25 … It is a death sentence to stay here," she said.
"On a daily basis I would probably have upwards of 20 dislocations. It's mostly knees, shoulders, and ankles for me."
She suffered her first dislocation seven years ago but was only diagnosed with Ehlers-Danlos syndrome in 2020 - and doctors here don't treat it.
So she and her mum Teresa flew to Germany for specialised surgery. There was no Government funding and it came with a price tag of more than $140,000 and a risk of dying.
"I truly believed she would be okay, I truly believed these guys knew what they were doing, I truly believed they would fix these compressions," Teresa said.
The German specialists discovered that four vascular compressions were cutting off blood flow to Aimee's organs, causing the major problems. Stents were inserted around the arteries to protect them and restore blood flow.
The seven-hour surgery was a success, but the recovery was tough.
"Physically it took a huge toll on my body. I had never been quite so incapacitated after that surgery. It took a lot of effort to get up and start moving again. But the mental game that went with that level of pain was nothing I've ever experienced before," Aimee said.
But it was worth it. Aimee used to faint up to six times a day, but now she hasn't fainted for two months. And the tube for feeding has been removed. She's also outside again socialising and back with her beloved animals.
"Now it feels like my life is starting again, it's like a complete do-over. Pre-surgery it was ending, now it feels like a brand new beginning," Aimee said.
"We were out of hope, so to have her future secured again is priceless," Teresa added.
Aimee is one of the lucky ones. She said there are many other young Kiwi women who are really struggling with Ehlers-Danlos syndrome but aren't being properly diagnosed or treated or even believed. Others who've also travelled to Germany have previously spoken to Newshub about their ordeal.
The mental and physical toll on them is huge.
"Things need to change. We can't keep going on like this, it's beyond ridiculous that we don't have doctors in this country that can treat us," Aimee said.
While Aimee had her surgery, an Australian Ehlers-Danlos syndrome patient made headlines for opting for assisted suicide. She was simply in too much pain.
"Honestly it was heartbreaking when I saw that. I had just come out of surgery and I had seen her report. And she had all the same symptoms and had been treated the exact same way the rest of us had. She didn't have any hope left."
Aimee is now focused on her future - one she never thought she'd have - and that includes studying nursing again to help patients like herself.
