A Whangārei woman is battling malnutrition if she does not get a jaw joint replacement soon.
Kate Greenaway, 25, is using private health insurance and fundraising to cover a $36,000 shortfall, to have the surgery privately.
It would take at least three years to get the surgery publicly, through a pathway that is not clear nor guaranteed, Greenaway said she was told by a specialist.
But she is unable to wait that long. In less than six months, Greenaway has lost more than a third of her body weight, due tomalnutrition linked to not being able to eat, plus fear of pain if she does eat.
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Ill health meant she had to quit roles as a rest home activities assistant and ballet teacher.
“The rest home team was amazing … I [also] loved being a dance teacher, I loved watching the dancers grow, but I couldn’t even drive to the studio, let alone teach dancing.”
The need for the joint replacement is familiar territory for Greenaway due to a rare, inherited connective tissue disorder, called Ehlers-Danlos syndrome.
In late 2020, she had to raise $75,000 to have the jaw surgery – called temporomandibular joint (TMJ) replacement – on her right side.
The May 2021 surgery was successful, with Greenaway managing to eat a burger and return to a normal life.
Sadly, the celebration was short-lived with the left side quickly deteriorating. Constant dislocations led to it being wired shut in November 2021.
Since then, she has had two surgeries to try and clean-up the joint and prevent further dislocations but, while the later surgery provided some temporary relief, the syndrome continues to impact the joint.
The physical inability to eat, plus an eating disorder associated with fear of eating, has seen Greenaway continue to lose weight and be hospitalised for malnutrition.
She has been using a feeding tube since January but a dairy allergy means it is not providing enough nutrition, with most liquid feed containing dairy, or being for weight loss.
Greenaway is now dangerously close to being hospitalised again for malnutrition, showing just how urgent the jaw replacement surgery is.
Across New Zealand, few TMJ replacements are funded through the public system or ACC. Nine have been funded since July 2022.
A Te Whatu Ora – Health New Zealand spokesperson would not specify which areas in the country the surgery is delivered, nor what conditions are funded.
But Greenaway said a Whangārei specialist recommended she have the replacement privately, believing it would take at least three years and plenty of lobbying for public cover.
“I think it became abundantly clear, after the right jaw was done and the left jaw failed, [private] was really the only option.”
She is fortunate, this time. Southern Cross Health Insurance has agreed to fund up to $60,000 for the surgery.
It is in the process of updating its policy so up to $60,000 of all TMJ replacements are covered in surgical cover policies, and it agreed to cover Greenaway as a one-off.
Acting CEO Kerry Boielle said Greenaway’s claim was approved due to it being medically necessary to progress and Southern Cross will continue to assess any similar claims until the policy is updated.
While Greenaway is extremely grateful for the cover, she is still left with a $36,000 shortfall.
She is hoping to cash in her KiwiSaver accounts and a friend has set up a Givealittle page. Her fiance Jayden Szekely is also investigating whether he can use his KiwiSaver to help.
She is also planning to do some fundraising with a merchandise range – anything to get the required funds, which is no mean feat for a young woman with no job.
“No 25-year-old should have to choose between saving for their wedding and a house deposit, and getting surgery to make sure they make it to the wedding.”
Te Whatu Ora Te Tai Tokerau, the former Northland District Health Board, would not discuss Greenaway’s treatment, despite receiving a privacy waiver.
Alex Pimm, interim director of provider services, said treatment options for a dislocating jaw range from using different pain medications up to total joint replacement.
“The full range of treatment options available are discussed with patients to achieve the best possible outcome for them, including referral to private providers.”
Despite the funding shortfall, Greenaway and her surgeon are already planning for the surgery.
She has plenty of plans for life after the replacement, including getting married, starting a family, advocating for other patients and returning to study as a paramedic – which she had to give up years ago.
Most of all, she is looking forward to being able to eat.
“I see people eating and I want to be able to go out on dates or picnics. Lots of social things are food related and food plays a huge part in joy for people.”