As her daughter got sicker and sicker, Maddy Turner’s quest for answers dragged on. Now she has them. For almost six months as she camped next to her daughter’s hospital bed listening to her moaning in pain, her left leg twisted and immobile, Maddy Turner kept one image firmly in her mind. It was of 14-year-old Amelia walking on a beach, scuffing her feet in the sand. Amelia loves the beach and spent many summers at her grandfather’s house in Whitianga. But as she lay in bed

A Whangārei mother whose daughter starved to death hopes a new device being developed could prevent others from the same “unimaginable” death. Jo Hill’s 23-year-old daughter Ruby died from gastroparesis in 2019. According to the Mayo Clinic, gastroparesis occurs when the muscles used to move food through the stomach become paralysed, preventing digestion. Patients with the condition, which has no cure, struggle to maintain weight due to their body being unable to absorb nutr

Health New Zealand Te Whatu Ora is reviewing how a rare connective tissue disorder is diagnosed and treated because “the current evidence...

A Wellington teenager who cannot eat or drink and hasn’t been to school in 16 months has a chance of getting her life back. About $95,000...

Her active lifestyle a few years’ ago feels like a lifetime ago for Melissa King. The former Auckland-based retail manager and fitness instructor now can’t shower without feeling exhausted. “It has been a wee bit of a rough couple of years.” The 28-year-old’s weight is now 39kg, her skin is dry, her hair is falling out and she is unable to get a feeding tube to assist her malnourished body. It was two years ago when her health started to deteriorate, including two kidney ston

A Wellington teenager who loved competitive cheerleading, violin and debating is no longer able to eat or drink and urgently needs...

Teenager Jemima Thompson was given three years to live due to an abdominal condition – until she went to Germany and had a life-saving...

She searches her phone for the list of favourite foods she can’t wait to enjoy again. Maia de Wit is 17, so naturally pizza rates highly. Talking about toppings is one of the few times she tries for a smile. She’s not quite sure what her favourites are any more. There are many flavours her taste buds have simply forgotten. The Ashhurst teenager has not eaten a meal since 2022. She is sustained by a feeding tube. The occasional spoonful of jelly is purely functional. It puts h

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

A radio host who went public with his daughter’s journey with Ehlers-Danlos syndrome has spoken of how traumatic the experience was, and...

In less than a year, Pip Lewis went from being fit and healthy to “in so much pain that I couldn’t literally hold a cup of tea”. The...

An 18-year-old girl diagnosed with likely Ehlers-Danlos Syndrome (EDS) has been refused treatment in New Zealand as doctors claim she is...

Three Kiwi women diagnosed with Ehlers-Danlos Syndrome (EDS) who struggled to have their illness recognised have died in the last three months. Now an advocate says change is urgently needed to help those with EDS “lead the lives that they deserve to have”. EDS is a genetic connective tissue disorder that can lead to gastrointestinal problems. But even after being diagnosed with EDS by specialists, several New Zealand women have been labelled with “suspected factitious disord

The last time Olivia Adie was able to eat something – and keep it down – was in late 2021. Fast-forward two years and the Dunedin teen receives her nutrition via a nasogastric tube, and has been absent from school since term two. The 17-year-old was desperate to live a normal life, but her multiple chronic illnesses, including abdominal vascular compression syndromes (AVCS), which causes serious discomfort whenever she eats or drinks, prevented that. “I can't go to school, I

Tributes have poured in after Stephanie Aston, the young woman who publicly stood up for herself after being told she was faking her symptoms by doctors, has died. Ehlers-Danlos Syndromes New Zealand described Aston as a “beacon” for those with the illness in a tribute to her on Facebook. “She has also been a beacon for many in our community. Hosting multiple events in Auckland throughout the years and being active in our support groups and helping give direction to many, inc

A mother says she has lived in “absolute hell” after being accused of medical abuse for pursuing overseas treatment for her daughter who has a rare health condition. Ashburton resident Zalie Doyle, 39, was cleared by Oranga Tamariki in April of any wrongdoing for taking her 15-year-old daughter, Taylor, for two surgeries in Australia and Germany. An advocacy group says people with rare disorders and their families are often met with scepticism in the health sector, and this c

A 13-year-old girl hasn't been able to eat or drink for a year because of a rare health condition. North Shore resident Emma Hartley has Ehlers-Danlos syndrome – a connective tissue disorder that causes the dislocation of joints – and as a result she has to be fed through a tube. Surgery in Germany will allow her to eat normally again, but the Hartley family is looking at more than $180,000 in costs. “It affects me in the way that I dislocate every couple of days, and this in

Newly engaged with a dream home under way, Michael Rohs had just become a father when a rare genetic condition led to him dying during...

Five months ago, Sarah Wills was slowly dying. She was in excruciating pain and she vomited every time she drank or ate. The 20-year-old...

Wills has developed additional vascular syndromes, May-Thurner syndrome, compression on the left iliac vein in the pelvis, and nutcracker...