Dunedin woman with Ehlers Danlos syndrome wrongly diagnosed with eating disorder

Millie Hardiman struggles to talk about the time she was diagnosed with anorexia nervosa. Photo / Rachael McKenna

After being told she had an eating disorder for years, this Dunedin woman finally has a correct diagnosis.

Millie Hardiman struggles to talk about the time she was diagnosed with anorexia nervosa and taken to an eating disorder ward, where she contracted norovirus and was woken every half hour to check she was breathing.

Despite entering the mental health hospital with severe stomach pain and nausea, made worse by consuming food or even a sip of water, she was forced to eat and drink.

The ordeal left Millie, then 17, with complex post-traumatic stress disorder, sleep paralysis and worse health. But the most concerning thing was that she didn’t actually have an eating disorder.

Doctors misdiagnosed Millie's ongoing symptoms as chronic fatigue syndrome, an autoimmune disease and then anorexia. Photo / Woman's Day

After a lifetime of fighting to be heard by doctors – who misdiagnosed her ongoing symptoms as chronic fatigue syndrome, an autoimmune disease and then anorexia – Dunedin-based Millie was finally diagnosed with Ehlers Danlos syndrome (EDS) in 2019. It came a year after she was sectioned under the Mental Health Act and made to spend 10 weeks at Princess Margaret Hospital in Christchurch.

EDS is a rare and incurable genetic condition that affects the connective tissue and production of collagen, which acts like a “glue” in the body to hold everything together. Millie has the hypermobile subtype, which severely impacts her gastrointestinal motility. For most of her life, she has lived with chronic pain and fatigue.

“Unfortunately, EDS and its complications are poorly understood in New Zealand,” explains Millie, 22, who also has mast cell activation syndrome, which causes severe allergy-like symptoms.

EDS is a rare and incurable genetic condition. Photo / Woman's Day

“I was gaslit and told my symptoms weren’t real. I was stereotyped as a young white female and told I had an eating disorder.”

Millie was 13 when she started visiting her GP with extreme fatigue and joint problems. She was tested for glandular fever and low iron, before being told she had the autoimmune condition Behcet’s disease.

But treatments didn’t help and Millie’s health continued to deteriorate, leading to constant nausea and pain whenever she ate or drank. She dropped 13kg in six months and was admitted to hospital at 15, when she was labelled with anorexia.

By 17, Millie was still unable to keep on weight, and her high school considered the best course of action was to advise doctors to have her sectioned under the Mental Health Act and taken to an eating disorder ward.

“I said no because I knew I didn’t have anorexia, but I had to do what they said,” she says. “I wasn’t allowed to speak with my mum for the first few weeks and I saw no point trying to plead my case as nobody was willing to listen. I felt completely dehumanised and terrified.”

Millie and her mum, Janine, believe she put on weight while at a hospital in Christchurch because of fluid and inflammation. Photo / Rachael McKenna

Millie put on weight, which she and her mum Janine, 53, believe was from fluid and inflammation.

“Gastrointestinal motility disorders are often triggered by viruses and the norovirus I got in the first week may have triggered them for me,” she explains. “I haven’t been the same since.”

Millie’s devoted mother, a former pharmacist, vigorously researched and pushed for assessments, as well as finding an Auckland rheumatologist who finally diagnosed her daughter with EDS.

Millie learnt there’s no cure for the disease and was told she’d need a feeding tube for the rest of her life, which came as a shock.

“I tried to access total parenteral nutrition, which is nutrition delivered through a vein to your heart, but was told it wasn’t an option for me as my immune function was too low,” she says. “I’d run out of options in New Zealand and was lucky Mum looked at options overseas.”

Janine contacted a German specialist, who looked at Millie’s scans and diagnosed her with AVCS. Photo / Rachael McKenna

In 2020, Janine contacted a German specialist, who looked at Millie’s scans and diagnosed her with abdominal vascular compression syndromes (AVCS), a group of painful conditions caused by abnormal pressure on blood vessels, which aren’t widely recognised in Aotearoa.

Then Covid hit and Millie’s weight plummeted to a tiny 26kg during lockdown. She was unable to talk because her energy was so low and her family feared she might starve to death.

“I sustained brain damage from either malnutrition or the compressions reducing the blood flow to my brain.”

Fortunately, Millie survived and withstood a physically gruelling trip overseas with her mum in November 2021, making Millie, then 18, the first person in Aotearoa with AVCS to travel to Germany for life-saving surgery.

However, when they arrived, specialists said her weight was far too low to undergo the massive operation. The devastated pair returned home, where doctors told Millie she wouldn’t survive to see Christmas.

Millie’s weight plummeted to a tiny 26kg during lockdown. Photo / Woman's Day

“I sought assistance for palliative care, but because my condition wasn’t understood, I didn’t meet criteria for hospice or assisted dying,” she recalls. “It felt like the world was crumbling and I was in pure panic.”

Millie tried different medications and painfully fed herself over a few months, focusing all her energy on gaining weight to have surgery. Through pure determination, she managed it and in April last year, thanks to help from Givealittle donations and her mother’s savings, they flew to Spain. Millie underwent two operations to help relieve the pressure in her stomach.

“They were amazing in Spain,” she enthuses. “One of the specialists travelled over 300km to be there. The main surgery took three and a half hours and then I had another small procedure a week later, which were both successful.”

Helping with blood flow, the operations saved Millie’s life. Almost a year on, she is feeling better and weighs around 50kg.

“I still deal with debilitating symptoms due to other aspects of EDS, but I’m no longer dying and I’m able to function,” she says. “I’m not sure what’s next for me, but my dream future is just to be well and happy, and I’d like the same for my family.”

As well as studying psychology through distance learning, Millie is enjoying taking her family’s beloved dog Benji for walks and being barefoot in nature, which she calls a “novelty”.

It brings her satisfaction knowing about 70 people have been diagnosed with AVCS since her own diagnosis. More than a dozen went overseas for similar operations, including two women she knows in Dunedin. A vascular surgeon also travelled internationally to learn about the conditions, which he can now diagnose in New Zealand.

“It wasn’t available when I needed it, but it’s great people might not need to go through what I did,” Millie concludes. “I’m so grateful to be alive and I’m still fighting.”

To help support Millie’s recovery, search for her on givealittle.co.nz

Hair and makeup: Louise Dignan.