A young mum-of-two has opened up about how a sore neck led to a diagnosis of 19 rare and chronic health conditions that have left her bedridden for most of the day.
Meaghan Kiely, 38, from Bunbury in Western Australia, has spent the past year in and out of hospital after a routine visit to a physiotherapist to strengthen her neck muscles following a skiing injury in 2009.
The appointment, which was in January last year, ended badly, with Meaghan suffering a bulging disc in her neck while doing the prescribed exercises.
Over the next six months she had severe migraines which forced her to quit her job as a behavioural therapist for children with autism.
Her speech soon became affected, her brain was foggy and she lost consciousness if she tilted her head backwards.
Meghan Kiely with her husband before the family were forced to move across the country for medical help after finding she was suffering from several dilapidating health conditions
Meaghan Kiely, from Bunbury, about two hours south of Perth, has spent the past year in and out of hospital after suffering a bulging disc in her neck in January, 2021 during a routine physio appointment
Doctors discovered that Meaghan had the genetic disorder Ehlers-Danlos syndromes (EDS) – which affects the skin, joints and blood vessels, and was exacerbated during her visit to the physio.
Meaghan was then told that her brain had herniated and she developed Chiari malformation – a condition where a part of the brain pushes through the opening at the base of the skull.
Meaghan started suffering the first of many seizures in August last year, and now has a team of eight specialists working around the clock to help her deal with her many health disorders.
In another blow, tumours were recently found on Meaghan’s brain and spine with the young mum now needing to relocate to Sydney to receive treatment.
‘Each day is different, my husband and I basically have to manage each day based on which symptoms are flaring up and which symptoms are most present,’ she told Daily Mail Australia.
‘A good day for me is if I manage to get out of bed for an hour or two, and even then I can take a few days to recover.’
The young mum and her husband (pictured with their children) have both had to stop work to cope with the toll of her various chronic illnesses
Ms Kiely has shared regular updates of her illnesses to her social media pages
After her first seizure in August last year, Meaghan spent a week in a coma in the ICU.
When she finally woke up, she was temporarily paralysed on the right side of her body and had to learn how to walk again.
One of Meaghan’s many illnesses is a chronic inflammatory disease of her oesophagus.
It means her stomach doesn’t empty properly and her throat ‘thinks it’s having an allergic reaction’ to everything she tries to eat or drink.
She now has a tube in her nose that helps her get the nutrients she isn’t able to through eating.
‘It’s a struggle, its hard for me seeing Meg constantly in pain,’ her husband Selwyn Titus, who lost his job after taking time off to care for his wife, said.
‘She’s the bravest person I’ve ever seen in my life. I just feel helpless, because I’m a strong person and I can’t do anything to help her… I’d take the pain away if I could.’
The family were living in regional Western Australia when they were advised by the rural medical staff that they didn’t have the facilities to treat Meaghan, so the family packed up and moved to Melbourne.
A lover of travel, Ms Kiely and her family have travelled across Australia on several adventures – before her illness left her bedbound most days
Her health battles have been tough on her two young sons, aged four and seven, who Meaghan says have ‘caught on’ to the severity of her challenges.
‘My condition means I can’t walk properly sometimes, Selwyn has to basically lift me up and support me, and my four-year-old is constantly checking on me and asking if I need help walking today,’ she said.
‘I’m so incredibly proud to see how compassionate they are, but I’m so sad they’ve had to learn that lesson so young and in the way that they have.
‘It affects them emotionally. They really try to hold it in to be strong.’
Ms Kiely has been diagnosed with 19 chronic health conditions – and recently spent a week in a coma in ICU
Meaghan has provided regular updates on her Instagram page, and in one emotional video opened up about the mental toll of living with chronic pain.
‘I’m mourning the life I used to have because I’ve realised that I’m not going to get that back, that will never come back,’ she said.
‘I’m constantly hurt, what kind of life is this? I’m taking in the impact that this is having on my family, on my husband, on me, on my future on my goals.’
In another post she detailed the difficulty in wanting to be there for her sons.
‘Each day I get up I do my best to put myself together, not for anyone else but myself and for my kids. I may look normal, but it takes everything I have just to get ready most days.’
The mother said something that hit home was when her son was asked in his kindergarten class to draw a picture of what his parents did during the day.
‘He drew me in bed. That broke my heart,’ she said.
‘It is for my kids that I fight to get stronger, healthier and find answers to why my body is failing me.’
Not only does Meaghan now need cervical spinal fusion surgery to stabilise her neck, she will also need brain surgery to decompress the pressure in her skull.
‘My neck is constantly half dislocating when I move it. The surgery on my spine is to stabilise, it because the risk is if I have a bad seizure I could paralyse myself,’ she said.
Ms Kiely (pictured with her children) has provided regular updates on her Instagram page, and in one emotional video opened up about the mental toll of living with chronic pain
Her family have started a GoFundMe to help raise money for the many medical procedures she needs
The recent diagnosis of the tumours in her brain and spine will also need treatment.
The family are yet to learn if the tumours are cancerous, but are flying to Sydney to meet with specialists.
With both parents out of work, the family has set up a GoFundMe to help them cover the costs of Meaghan’s constant medical appointments.
The mother is hoping she can help shed the stigma around chronic illnesses.
‘Chronic illness is so hard and isolating, and you feel alone so often,’ she said.
‘You feel like you’re constantly fighting because you feel like people don’t believe you, but I want chronic illness sufferers to know that what you are going through is real and it looks different for everybody.
‘Don’t compare your experience to someone else and think its any less valid.’
Despite the horror past year and more difficulty on the horizon, Meaghan is determined to keep fighting.
There isn’t yet any indication of what her recovery may look like but she’s hopeful her upcoming surgeries my take away some of the pain.
‘When the blows keep coming… I’ll keep standing up again,’ she said.