A Northland woman who had dreams of being a paramedic has been forced to put her career on hold while she deals with a rare condition.
Kate Greenaway suffers from Ehlers-Danlos syndrome which causes her jaw to dislocate as much as twice a week, leading to numerous trips to the emergency department.
It's an agonising genetic disorder where a varied group of connective tissues can cause hypermobility and tissue fragility. Only four people in New Zealand were hospitalised with it as a primary condition in 2016/17, according to the most recent Ministry of Health data.
The remedy is a new jaw, planned for April 2021, but it comes at the astronomical cost of $75,000 - not a cent of which is covered by her medical insurance nor public funding.
That's despite her condition leading to other serious health effects including her ability to eat properly, resulting in the redevelopment of an eating disorder.
For Greenaway, it's a crisis. Her struggle with the condition has impacted her life so severely, particularly in the past two years, she can't do the things she used to.
"At the beginning, I'd dislocate my jaw and I'd go to the hospital willingly - [now] I've developed quite a fear of the emergency department - at points they didn't know what to do," Greenaway told Newshub.
"I can't eat, essentially, and it's become a pretty harsh cycle in that I'm malnourished and dehydrated which then causes me to faint, which then causes me to get injured and my pain to get worse."
She's now afraid of food because she's so scared that her jaw is going to come out.
"It's become very socially isolating - I kind of just have to take it easy and take it day by day. Most days I'm bed-ridden."
Despite the cost, the pain is unbearable. She's telling her story to raise awareness and so others with the condition may not have to break the bank as much in the future.
"I could take this whole road and get my surgery, and just not say anything about it but the resistance I've met and the struggles that I've had shouldn't be for nothing - I've recognised holes in the system and they need to be talked about, because they're not going to change if nobody talks about them or makes people aware of them," Greenaway. says. "I know that I'm not going to get this surgery funded - but if I can push for others to have an easier path - and also make it so they don't have to spend literally their whole life trying to pay off the surgery that will give them a life."
Ehlers-Danlos Syndromes New Zealand (EDS NZ) president Kelly McQuinlan says the main specialist in New Zealand who deals with the condition currently has more than 700 patients.
"At the moment the biggest issue with this condition in NZ is the fact that awareness and knowledge is limited."
McQuinlan says research statistics show between 1 in 2500 to 5000 people suffer from the conditions and affects both women and men.
"Because of the lack of awareness, there is a massive postcode lottery within New Zealand, meaning that some patients can't seek help due to travel costs and the impact on our bodies when travelling."
She believes there needs to be more action to help this group of Kiwis.
"I wrote to the Prime Minister and Health Minister, and we got acknowledgement from the Prime Minister via the Secretary, and got acknowledgement by the current Health Minister, Chris Hipkins.
"The support we are receiving currently is not good enough though. Words are nice, but we need to see more action, not just for EDS but all rare disorders in New Zealand."
Greenaway agrees.
"Public funding for this surgery is non-existent," she says.
"I've had Southern Cross [medical insurance] my whole life - they've paid for literally every surgery I've had - and from what I've spoken to them about they won't [cover it]."
McQuinlan says the condition can lead to people wearing themselves down - something Greenaway knows all too well.
She's keen to move on with her life. After the surgery, she wants to resume her studies.
"I might be going into just medicine in general - which would be really interesting,
"First plans after the surgery is to get back on track; get my mental health back to where it was.
"It's not going to be an overnight recovery either - it's going to be quite a big process," she says.
Despite being reluctant to do so, a friend of Greenaway's talked her into starting a Givealittle page, which has raised more than $6500 towards her cause.
Southern Cross says a temporomandibular joint replacement is one of several policies currently under review.
"Southern Cross carefully considers the health outcomes and cost efficiencies offered by technologies or treatments before introducing cover for them into our plans," a spokesperson tells Newshub.
"Balancing the cover available under our policies with the cost to members means not all healthcare services can be covered."
Meanwhile, Labour health spokesperson Chris Hipkins says there's a range of work underway to improve care for people with rare conditions.
"Funding for EDS is covered by the funding provided to DHBs to provide services to their local populations.
"Questions about why a certain procedure may or may not be offered are a matter of clinical judgement by DHBs and their medical experts.
"The issue of clinical advice between [a] patient and health professional is one best managed by health professionals."
