Canberra make-up artist Mel White had just reached her lifelong goal with a job working on the Baz Luhrmann film Elvis when her life drastically changed.
Two years ago, Mel started noticing she was bumping into things, losing her balance, having severe brain fog and couldn't get rid of a headache for a straight week.
Multiple medical appointments later, she was diagnosed with functional neurological disorder (FND), a common neurological movement disorder caused by a malfunctioning brain.
A scan revealed some other serious problems, including an aneurysm and multiple lesions.
"From the MRI we discovered there was a whole multitude of issues within the brain," Mel says of that time.
After being diagnosed with FND, Mel spent many months assembling and working with a multidisciplinary team.
"FND is a problem within the nervous system and how your body and brain send and receive signals," Mel says.
"My balance is terrible — I have to walk with a cane.
"So what we are trying to do is retrain the brain back to where it used to be.
"With the aneurysm and with the tumour we have had a plan, [but] with FND — that's been the most challenging and distressing because there wasn't really a plan."
If patients can secure an appointment for a diagnosis, FND is the second-most common reason patients visit a neurologist.
Women are more prone to an FND diagnosis than men and worldwide an estimated eight million people are living with the often debilitating and distressing functional seizures (or dissociative attacks), weakness, paralysis and chronic pain.
But there remains a fundamental lack of understanding, especially in Australia, regarding the diagnosis and treatment of FND, with limited resources and specialists available.
Reports of being belittled, ignored and dismissed are common, and Nell Allen-Coen says those experiences are amplified in regional and remote areas.
'It's never-ending'
Nell lives on a 10-acre rural property at Nethercote near Eden on the New South Wales far South Coast.
The 26-year-old was diagnosed with FND at 18 and also lives with complex regional pain syndrome (CPRS) and medical PTSD.
She regularly travels from her home on the coast to Canberra and Sydney for treatment.
"It varies hugely from person to person," she says.
"For myself, my main symptom is tremors."
The cost of some of Nell's care is now covered by the NDIS — when carers can be found locally — but much of it falls to her 70-year-old father Rob Allen.
"It is hard … it is never-ending," he says.
"It is 24/7 — if Nell wakes up at three in the morning and she needs a hand to go to the toilet, I still do that."
'What keeps me up at night'
In Sydney, medical researcher and occupational therapist Katherine Gill has been living with FND for a decade.
She channelled her experiences into the creation of FND Australia Support Services — a charity that relies on a handful of patient volunteers.
"We now have over 3,500 people in our support group and growing on a daily basis," Dr Gill says.
The not-for-profit offers peer support and counselling, including via a helpline staffed by volunteers who are also FND patients.
Dr Gill says they are currently receiving 12 to 15 enquiries every day from newly diagnosed Australian FND patients.
She says they urgently need a funded helpline to ease the pressure on FND patients.
She was instrumental in securing funding for the new Sydney FND Clinic — one of only three in the country, with the other in Brisbane.
The clinic provides assessment only and no long-term treatment.
Treatment has proven to be quite expensive for FND patients and Mel says she's lucky to be able to afford it.
She also thinks of others who have had to walk the challenging path to get a diagnosis and be able to set up a treatment plan in the first place.
"What keeps me up at night, if I can be brutally honest, is knowing how many young people have this.
"A lot of the time if you go to a neurologist they will just give you a sticky note to a website."
FND patients are calling for federal funding for public clinic treatment services in every state and territory.
Nell says she hopes there will be something in the upcoming federal budget.
"We need those people in power to look at this situation and pay attention to it."
