Mystery illness ruins Dunedin woman’s life: ‘I can’t eat’

Melissa King is set to travel to Germany for life-saving surgery after the New Zealand healthcare system failed to diagnose her. Photo / Peter McIntosh

Life-threatening health issues have made ordinary life impossible for a former Dunedin fitness instructor facing surgery abroad — even just a walk is now exhausting.

Melissa King says she just wants her normal life back.

The 27-year-old is facing a bill of more than $120,000 for her upcoming surgery in Germany after the New Zealand health system was unable to diagnose her conditions, let alone treat them.

Eating and drinking caused a lot of pain, and in the past year her weight had plummeted from 58kg to 46kg, she said.

She had also been struggling with extreme tiredness and had to give up her jobs as a retail manager and group fitness instructor.

She loved to be active, but when taking one Zumba class made her sleep for 20 hours, she knew she could not continue.

Now a walk would leave her “out of breath and just exhausted”.

Different doctors and specialists were unable to discover what was wrong with her and she was “referred from service to service” without success.

An eating disorder was the only explanation they could give, but she was insistent they were wrong.

Having experienced an eating disorder in her teens, her mindset now was completely different.

“I want to be able to eat, but I physically can’t eat with pain.

“I want to get my health sorted so I can actually go back to teaching with my full energy. I want to be able to work fulltime and be normal again.”

Being constantly told there was nothing physically wrong with her and it was all in her head was psychologically scarring, but she knew her pain was real.

The hardest thing was hoping for a diagnosis, and constantly being disappointed.

She urged people in similar situations not to give up.

“If you know there’s something not right, keep fighting ... Your health is valid.”

Reading about what it could be, she had found stories about people with symptoms almost identical to hers, who also struggled to find help in New Zealand.

After contacting them, she was put in touch with a specialist in Germany.

The specialist was sent copies of scans taken in New Zealand.

Despite the limited quality of the MRIs, several diagnoses were “highly likely”, his response stated.

This included nutcracker syndrome, a rare vein compression disorder and May-Thurner syndrome, another compression disorder that also affected blood flow, as well as splenic congestion and distorted ribs.

The response also flagged multiple signs of a possible connective tissue disorder.

Getting treatment was urgent, as she was becoming more unwell and had not been able to eat solid food for months.

A diagnostic scan was planned in Germany on September 5, followed by surgery scheduled to take place in Dusseldorf two days later.

Her parents had been very supportive, and her mother had set up a Givealittle page to help raise funds for the surgery.