And she is flying back to Europe for the second time in a matter of months in an effort to get the required surgery.
Melissa King, 28, went to Germany late last year for treatment.
She was diagnosed with Ehlers-Danlos syndrome and co-morbidity abdominal vascular compressions.
"Unfortunately, I have since developed new compressions and will be getting surgery in Spain to address these.
"I have been having an ongoing battle with our health board, who are refusing to offer me any form of nutritional support with claims that ‘I am too medically complex’.
"My weight has dropped down to 39kg and I am showing clear signs of malnutrition but still the health board are refusing to help me, both in private and public.
"My GP has put through a referral to the team three times — each time it bounced back saying they needed more information and finally ruling that they will not help with nutrition."
A former Zumba instructor, Ms King said she no longer had the energy to even walk and struggles to eat.
"It is incredibly disappointing that once again the health system refuses to take accountability and help patients like me.
"Staying in New Zealand is a death sentence for me. I have no trust in the health system and I genuinely fear having to deal with the system in future."
Ms King said even the simplest request for nutrition seemed impossible.
"It’s basically a challenge to do anything — they won’t give you the courtesy of a consultation.
"When we went to Germany and came back we thought that maybe we would get a little bit of support.
"But it’s like we’ve been punished for going to Germany."
Ms King said she was aware of other people who had been through similar situations in New Zealand.
"It’s kind of like we’re being treated as a ‘naughty little child’.
"They’ve put their foot down."
Ms King and her parents were planning to travel to Spain in a couple of weeks.
"It’s a lot of money to get there, but we’ve basically got no option without nutrition. It’s a waiting game."
She wanted Health New Zealand Te Whatu Ora (HNZ) to start listening.
"I would like HNZ to change their thinking and support us — there needs to be a pathway forward, whether it be management in the community, or nutrition and fluids."
HNZ declined to comment on Ms King’s case, other than saying "we continue to engage with [Ms King] and her family about her care and treatment options — most recently, at the end of last week".
"Ehlers-Danlos syndrome (EDS) is a rare, life-long group of conditions with severity and complexity varying between people, and problems can accumulate over time", HNZ said.
"A diagnosis can only be made after criteria are met and we seek to deliver evidence-based assessment and treatment aligned with best evidence.
"Unfortunately, people with EDS can suffer a complex number of symptoms and treatment options will differ for each individual."
A Givealittle page has been established for Ms King.
She had also filed a complaint with the health and disability commissioner.
