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A young woman living with agonizing pain and a constant fear of a dislocated jaw from just a sneeze is trying to raise $ 75,000 for a jaw replacement.
Kate Greenaway, 22, suffers from the rare and painful genetic condition Ehlers-Danlos syndrome, which leads to faulty production of collagen, which binds the body.
This causes him to have dislocations in his shoulder, knee and jaw joints, with the jaw being the one that suffers the worst impact: dislocations up to twice a week.
Helen Chapman / Supplied
Whangārei resident Kate Greenaway would love to eat a hamburger but lives in constant fear that her jaw will dislocate.
A simple sneeze or cough can cause Greenaway’s jaw to become completely dislocated and completely stuck, requiring a trip to the Whangārei Hospital emergency department to reset it, usually requiring sedation and sometimes surgery.
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“I struggle a lot with the fear of it dislocating. At times he avoided going out for fear that he would dislocate and have to spend the day in the emergency room. “
Greenaway also has a number of Ehlers-Danlos-related syndromes, including mast cell activation that causes intermittent anaphylaxis (allergic reaction) and a syndrome that causes her to constantly pass out, sometimes dislocating her jaw if she falls awkwardly.
Anxiety about dislocating the jaw or having an allergic reaction has led to a fear of food, causing a relapse into an eating disorder.
Supplied
Kate Greenaway’s jaw can dislocate up to twice a week. Private specialists recommend a complete replacement.
“I have a history of anorexia and my limited intake, combined with my allergies, has created this great fear around food.
“Just because it’s agonizing to eat, I can’t eat anything solid, so all I eat is oatmeal and soup from packages.
“It’s boring, it’s depressing; I’m losing energy and I feel quite isolated. “
Greenaway’s jaw is now so damaged (medically called the terminal jaw) that two private specialists recommended a total joint replacement, at a cost of $ 75,000.
Supplied
Kate Greenaway has been in and out of the hospital numerous times, but hopes that a complete jaw replacement will allow her to study and work in medicine.
The price is so high because only a Christchurch specialist will perform the surgery, due to the complexity of her condition and her young age, which means the replacement may not last her entire life.
While Greenaway has had Southern Cross insurance since he was born, and has covered many other surgeries, a total jaw replacement is not specifically covered.
However, a Southern Cross spokesperson said the surgery is under review.
“Given our status as a friendly, non-profit society that exists solely for the benefit of members, Southern Cross carefully considers the health outcomes and cost effectiveness of technologies or treatments before introducing coverage for them in our plans.”
The Northland District Board of Health specialist does not recommend this surgery as the first or best option for Greenaway, but feels he has exhausted all publicly funded options.
High costs, including trips from Whangārei to Christchurch, are even more difficult for Greenaway to cover because he had to give up his “dream job” as a paramedic apprentice due to poor health.
“If I don’t get it [this surgery]I will not be able to go to work, I will continue to be malnourished … The pain prevents me from sleeping. With the pain and not being able to eat, I feel miserable. “
While Greenaway doesn’t like to be a burden to others, a close friend convinced her to try creating a Givealittle page, so people can donate if they want to.
Supplied
Kate Greenaway’s Christchurch specialist performed exploratory surgery on her jaw and concluded that a total joint replacement is the only option.
The surgery has been scheduled for April 2021 and Greenaway and his family are determined to find a way to pay for it no matter what.
“I can’t afford $ 75,000 but I have to make it work, because otherwise my life is nothing.”
Greenaway hopes to eat a hamburger once he undergoes the surgery.
But, more importantly, he is aiming to go back to studying in the medical field, using his knowledge as a patient, to help improve the health profession.
WHERE TO GET HELP FOR EATING DISORDERS:
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1737 – Toll Free or Text 24 Hours a Day to Speak with a Counselor
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Healthline – 0800 611116, available 24 hours a day, 7 days a week
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EDANZ – 0800 2 EDANZ – Support for the family of people with an eating disorder.
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If you think you have an eating disorder, see your GP right away for a referral to specialized services.
If it is an emergency or you or someone you know is at risk, call 111.
