A Whangārei woman who had to rely on donations to get her failing jaw joint replaced is now looking forward to getting on with her life, including studying to be a nurse.
But Kate Greenaway, 25, hopes there will be more funding options available next time she needs the joint replaced.
Greenaway was battling malnutrition after her deteriorating left jaw joint resulted in her being unable to chew, battling a fear of pain from eating and worry about constant jaw dislocations.
The problem was caused by a rare genetic connective tissue disorder, called Ehlers-Danlos syndrome.
In April, Greenaway went public about her plight and generous Stuff readers covered a shortfall of more than $36,000 for private surgery.
Insurer Southern Cross also helped fund the surgery, called temporomandibular joint (TMJ) replacement.
Greenaway had the surgery in Auckland on August 10 after a health rollercoaster and anxious waiting – including a month’s delay to get the new jaw joint sent from the US.
Determined to remember all those who made the surgery possible, she crocheted a shark to be with her while she got her new “jaws”, filled with a glitter star for every person who donated.
Now home from the surgery, Greenaway says she is still recovering and will not be able to chew hard foods until late September.
But she is looking forward to starting a new chapter free from jaw pain, including studying to be a nurse.
“It’s a little bit surreal, but I’m already starting to get my life back.”
Greenaway was previously training as a paramedic until her own ill health forced her to stop, and she hopes her experience as a patient will help her be a better nurse.
“I’ve seen the good and the bad and I know what makes a difference. I would like to be the one that makes the experience better for others.”
Unfortunately, Greenaway has plenty of patient experience due to Ehlers-Danlos, including already having her right-hand jaw joint replaced in May 2021, again thanks to generous donors, with no health insurance available at the time.
This time, Southern Cross paid $60,000 towards the operation, and it backed down on a $10,000 reduction to that payment after being contacted by Stuff.
A spokesperson says Southern Cross is glad to have reached a resolution with Greenaway after “a bit of confusion at our end”.
Greenaway says it’s a step in the right direction that Southern Cross now plans to fund $50,000 for unilateral replacements and $80,000 for bilateral replacements, for those who need both sides at once.
She has been informed her jaw joints will need replacing again in about 10 years’ time and hopes there will be more options for insurance by then, or even public funding.
Just 11 TMJ replacements were publicly funded between July 2022 and June 2023, making jaw joint replacements a “poor cousin” to the likes of hip and knee replacements, Greenaway says.
She would also like to see more early intervention for jaw problems, as many people just ignore a “clicky jaw”.
Other health problems associated with Ehlers-Danlos, including a paralysed stomach and small bowel obstruction, mean Greenaway’s feeding tube has to stay in for now.
But she is looking forward to being able to chew more stomach-friendly foods, with toast being top of the list when she is able to put her new jaw into action.