Ehlers-Danlos syndrome sufferer Georgie Ferris dies, family remember ‘treasured daughter’

The family of Nelson woman Georgie Ferris, who suffered from Ehlers-Danlos syndrome (EDS), have paid tribute to their “treasured daughter”, who died on Monday.

In a tribute on Instagram, Ferris’ family wrote: “Gee was a rare soul who inspired everyone she met through her resilience, courage and kindness while continuing to show endless grace in the face of adversity.”

The woman in her mid-20s lived with EDS, a genetic connective tissue disorder that can lead to gastrointestinal problems.

Twin sisters Liv and Georgie Ferris. Photo / Tim Cuff

Ferris was the daughter of Robyn and Chris and the twin sister of Liv.

Her funeral or “after party”, as the post described, will be held at Shone & Shirley Funeral Directors on Sunday, December 3, at 11am.

“Gee’s family are forever grateful for the wonderful community who have loved and supported her throughout her journey,” they said.

In 2018, Ferris spoke to the Herald about her condition and said in the space of 12 months she went from 53kg to 33kg due to not being able to consume solid nutrition.

During an admission to the National Intestinal Failure Service at Auckland Hospital in 2015, prior to being diagnosed with EDS, a doctor said there was reason to be suspicious of factitious behaviours or Munchausen by proxy.

Previously known as Munchausen syndrome, factitious disorder is a mental illness where a person creates symptoms and is willing to undergo painful or risky tests to get sympathy and special attention.

Munchausen syndrome by proxy is a mental illness and form of child abuse where the caregiver of a child, most often a mother, either makes up fake symptoms or causes real symptoms to make it look like the child is sick.

Georgie Ferris got down to 33kg before doctors would treat her because a psychiatrist suggested she was making up her illnesses. Photo / Givealittle

After an assessment conducted by the doctor and a psychiatry registrar, Ferris said she struggled to get medical treatment for increasing complications stemming from visceral hyperalgesia - sensitivity to pain in the internal organs.

The alleged lack of care forms part of a complaint she made to the Health and Disability Commissioner (HDC) in September 2016.

In the complaint, she asked that hospital staff treat her with the care and respect she deserved and that all references to Munchausen syndrome and eating disorders be deleted from her file.

“It takes away all my care options and it’s incredibly embarrassing because it’s actually not true,” Ferris said.

The shocking photo of Georgie Ferris at 33kg that her mother sent to Nelson Hospital before doctors treated her again.

“It’s hard enough going to hospital as it is and when you’re there you are wanting help and you are turned away because of this label, and I just don’t think that’s fair at all.”

In September, Auckland woman Stephanie Aston, 33, died at her home. Aston fought a public battle against EDS after being told she was faking her symptoms by doctors.

Despite her diagnosis, she was later told she was wasting medical professionals’ time and was told she was faking her illness because she would not dislocate her shoulder on command.

Stephanie Aston battled to get proper treatment for EDS. Photo / Michael Craig

Norma Hockenhull, who was diagnosed with EDS in 2017, has also spoken about her own battles.

Having trouble digesting liquids and solids, Hockenhull’s weight dropped critically low earlier this year, at almost 178cm tall, she only weighed 46kg.

“I was told by my specialist that I was critical and needed intervention else I would be at risk of death.”

Despite this, Hockenhull was referred to a health psychologist who implied her issues were due to an eating disorder.

But one surgeon fought for Hockenhull and placed a stent in her stomach to help her digest food, which led to the discovery that she also had pyloric stenosis which was impacting her food digestion.