Rachel Kayrooz remembers the primary time she was seized two years in the past, gripped by worry as her teenage daughter watched on in horror.
“My daughter and I did not know what was happening and I could not talk or transfer,” she advised 7NEWS.com.au.
“It is actually scary as a result of in that second you do not know what’s taking place.”
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The Queensland mom assumed it was epilepsy and went via a prolonged analysis course of to find she had practical neurological dysfunction (FND) — an abnormality in how the mind receives and sends info to the remainder of the physique.
“I had no thought what it meant,” she mentioned, however the dysfunction would quickly take over her world.
FND is the second-most common reason individuals see a neurologist, however its prevalence in Australia is unknown.
Signs current just like neurological issues similar to MS or stroke however with out organic proof, making chasing a analysis a troublesome process.
This mixed with a lack of know-how means signs are sometimes misunderstood and misdiagnosed, and sufferers report being despatched away with out the required assist or a therapy plan.
“That is actual. That is debilitating. It utterly derails individuals’s lives,” Kayrooz mentioned.
A brand new actuality
For an individual with FND, their mind is unable to ship and obtain indicators correctly — as if their mind’s {hardware} is ok however the software program doesn’t work as regular.
A single mom, Kayrooz was used to being the spine of her family however all that needed to change.
“I’ve raised my daughter as a single mum, I’ve all the time been working, all the time supplied by myself with out one other companion,” she mentioned.
“I am speculated to be the mum and the stronghold, and I felt like I used to be turning into this incapacitated factor.
“How am I going to maintain offering for my household? The place to now?”
It is the mundane day-to-day duties which have modified essentially the most, she says.
“Am I OK to be within the kitchen?” What if I had a seizure and the fuel was left on? It truly is these little issues,” she mentioned.
Kayrooz typically requires a strolling cane and suffers bouts of crippling ache that go away her immobilized.
“Typically I get sharp stabbing pains like a knife in my head,” she mentioned.
“I hopped within the automotive at some point and thought a redback spider bit me as a result of I used to be in a lot ache — nerve ache that will make a grown man scream.”
FND has additionally positioned a brand new pressure on her relationship along with her 19-year-old daughter.
“She’s been thrown into this analysis, seeing her mum have these seizures and mum cannot stroll and mum cannot talk,” Kayrooz mentioned.
“We’re very shut however it’s not easy, it places a pressure on households as a result of we lose our independence particularly in the event you’ve been the chief of the family.”
‘A combat day by day’
For Kayrooz, day by day is a battle to make her physique do what she needs.
“My mind is sending indicators to my physique, the central nervous system, however typically your physique simply does not work,” she defined.
“You will go to seize a drink along with your arms, however your hand will not go and seize the cup for you.
“It is a combat day by day, some are higher than others.”
The causes of FND fluctuate — some individuals don’t have any apparent set off, whereas others similar to Kayrooz may be from trauma or stress.
The dysfunction typically causes non-epileptic seizures from mind dysfunction — episodes of motion, sensation and conduct just like an epileptic seizure that may carry non permanent consideration or reminiscence loss, confusion and lack of consciousness.
It could actually additionally have an effect on actions of the physique and trigger tremors; leg and arm paralysis; sudden, involuntary twitching; issues with strolling and muscle stiffness. Different signs embody speech difficulties, power ache and excessive fatigue.
When Julie Wright acquired a FND analysis, her neurologist was useful and directed her in direction of allied well being professionals for therapy. However that isn’t all the time the case.
A scarcity of organic proof of the dysfunction means sufferers are sometimes made to really feel prefer it’s all of their heads and face skepticism when searching for a analysis.
“Most individuals after they do get recognized with FND, and it may be years earlier than they’re truly recognized, they’re given a web site with a Publish-it be aware and advised to look that up,” Wright advised 7NEWS.com.au .
“If that had occurred to me, I might be misplaced … and also you’re left with actually debilitating signs.”
Wright, who volunteers as a peer help officer at charity FND Australia Support Servicesmentioned the service receives about 15 to 20 messages a day from individuals with the dysfunction or their family members asking for assist.
“We’ve got 1000’s of Australians on the market who’ve FND and who do not know the place to go or who to talk to, they usually discover us,” Wright mentioned.
“It is all about saying, it is OK, therapy is accessible and serving to clear a scientific pathway for individuals.”
Assist wanted
With no recognized treatment, FND is handled by managing symptoms through multi-disciplinary therapies that purpose to enhance somebody’s skill to hold out on a regular basis duties.
For Kayrooz and numerous different Australians with FND, paying for therapy is one other hurdle.
“When individuals get FND, the very first thing to go is their jobs. The second factor to go is the medical health insurance as a result of they can not afford it,” Wright mentioned.
“So persons are left not solely with extreme incapacity, they’re left in extreme monetary hardship.”
Kayrooz is aware of this first-hand.
“With all the price of residing pressures at the moment, I’ve to assume is my therapy going to return first or is feeding my household and paying my mortgage?” she mentioned.
Assist is the important thing to maintain going, Kayrooz says, and he or she was capable of finding that via FND Australia Assist Companies.
FND Australia Assist Companies presents counselling, an OT program, coaching, scientific pathways for therapy and an app with info — however the volunteer-run charity says it’s alone in offering this help to Australians and extra must be performed.
“For individuals newly recognized and when a neurologist does not say or just is not up with the perfect therapy obtainable, then an individual is left to their very own gadgets,” Wright mentioned.
“I would like the federal government and the medical fraternity to know what this situation is, to coach themselves and make extra help obtainable,” Kayrooz added.
She needs different “FND warriors” to know the dysfunction doesn’t management their identification.
“I’ve needed to search for alternative. I needed to go, ‘I am unable to sit right here with this and simply assume that is what my life is now’,” she mentioned.
“This analysis and incapacity does disable you, however then it’s important to attempt to turn into options targeted as a result of in the event you stick to that mindset for too lengthy it might actually eat up at you and you do not see a approach ahead.”
FND Consciousness Day is on March 25.
