Dunedin woman Millie Hardiman finds hope after surgery for rare condition

Millie Hardiman says the support of her mother Janine has helped her through the difficult journey to be treated for Ehlers-Danlos syndrome, a little-known yet potentially deadly condition. Photo / Peter McIntosh, ODT

Medical experts said she would not see out the year, but Millie Hardiman was able to send them a Christmas card.

The 21-year-old has survived a multi-year struggle with Ehlers-Danlos syndrome against all expectations — except perhaps her own.

Hope kept her going, along with the support of her mother, Janine, who sold their home late last year in a last-ditch effort to fund the medical help that could not be found in New Zealand.

Hardiman has now returned to Dunedin feeling better than she has done in years after undergoing major abdominal surgery in Spain last month to treat conditions associated with the rare genetic connective tissue disorder.

It would be up to a year before she knew how effective it was, but she could already notice improvements, she said.

“I can take a deep breath for the first time in years, and I’m able to sit up for longer.”

The condition caused vascular abdominal compression syndromes and made eating extremely difficult, and for a long time she had weighed about 26kg.

“The pain with eating is just different now, and doesn’t last so long.”

She first began feeling unwell at age 13, but could not pinpoint the cause.

“Then when I was 15 I got all the symptoms of the compressions and lost a bunch of weight, and no one knew what it was.

“Because I was a 15-year-old girl underweight, they just labelled me as having anorexia.”

A lack of recognition of the Ehlers-Danlos syndrome was a factor in why she was not diagnosed until age 18, although this now seemed to be changing.

While severe cases might be rare, it was more common than people thought and many probably went undiagnosed, she said.

However, New Zealand still did not have the expertise or funding available for those with the condition.

“I can’t think of a more excruciating condition, and it’s made even harder by the fact that there’s no specialist you can go to to manage it; there’s no standard treatment.”

She had been half her current weight and had not even been able to speak for six months, she said.

Doctors were “constantly” telling her she would not make it to the end of the year.

This included experts in Germany, who in 2021 decided she was so thin she would not survive the life-saving surgery she had travelled so far to undergo.

“I had to just come back to New Zealand, with them telling me I wouldn’t make it ‘til Christmas. I sent them a Christmas card.”

Surviving for years when people told her she would not made her hope she could get better.

“I’ve got a really close relationship with Mum, and I’ve got lots of hopes and dreams and things that I’d like to do.”

She was considering studying psychology part-time if her health allowed it.

“Through all of this I’ve realised you can’t control your life and things happen, but you can control your attitude and outlook, and I’d like to help people with that.”

Surgery in Spain was the only way forward, but cost $98,000, and the trip would total $140,000.

She and her mother had left for Spain with a very short window available to them, and there was no time to fundraise, but her mother had started a Givealittle page. More than $42,000 had been raised in six weeks.