A young mother of two has shared how a sore neck led to the diagnosis of 19 rare and chronic health conditions that 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 following 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 developing a bulging disc in her neck while doing the prescribed exercises.
For the next six months, she developed severe migraines that forced her to quit her job as a behavioral therapist for children with autism.
Her speech was soon affected, her brain was foggy and she lost consciousness when she tilted her head back.
Meghan Kiely with her husband before the family was forced to travel across the country for medical care after discovering she was suffering from several ill health conditions
Meaghan Kiely, from Bunbury, about two hours south of Perth, has spent the past year in and out of hospital after sustaining a bulging disc on her neck during a routine physio appointment in January 2021.
dDoctors discovered that Meaghan had the genetic condition Ehlers-Danlos syndrome (EDS) – which affects the skin, joints and blood vessels, worsening during her visit to the physio.
Meaghan was then told her brain had a herniated disc and she developed Chiari malformation — a condition in which part of the brain pushes through the opening at the base of the skull.
Meaghan suffered the first of many seizures in August last year and now has a team of eight specialists working around the clock to help her cope with her many health problems.
In another blow, tumors were recently found on Meaghan’s brain and spine, with the young mother now having to move to Sydney for treatment.
“Every day is different, my husband and I basically have to manage each day based on which symptoms flare up and which symptoms are most present,” she told the Daily Mail Australia.
“A good day for me is if I can get out of bed for an hour or two, and even then I may need a few days to recover.”
The young mother and her husband (pictured with their children) both had to retire from work to cope with the toll of her various chronic illnesses.
Ms. Kiely has regularly shared updates about her illnesses on her social media pages
After her first attack in August last year, Meaghan was in ICU for a week in a coma.
When she finally woke up, she was temporarily paralyzed on the right side of her body and had to learn to walk again.
One of Meaghan’s many illnesses is a chronic inflammatory disease of her esophagus.
It means her stomach isn’t emptying properly and her throat “thinks she’s having an allergic reaction” to anything she tries to eat or drink.
She now has a tube in her nose through which she gets the nutrients she can’t get from eating.
“It’s a struggle, it’s hard for me to see Meg in constant pain,” said her husband Selwyn Titus, who lost his job after taking time off to care for his wife.
“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 was living in regional Western Australia when they were told by rural medical staff that they did not have the facilities to treat Meaghan, so the family packed up and moved to Melbourne.
Ms Kiely, a travel enthusiast, have toured Australia with her family on several adventures – before her illness left her bedridden most days
Her health problems have been tough on her two young sons, ages four and seven, who Meaghan says have “understood” the seriousness of her challenges.
“My condition sometimes prevents me from walking properly. Selwyn actually has to lift and support me, and my four-year-old keeps a constant eye on me and asks if I need any help with walking today,” she said.
“I’m so incredibly proud to see how compassionate they are, but I’m so sad that they had to learn that lesson so young and in the way they have.
‘It touches them emotionally. They really try to hold back to be strong.”
Ms Kiely has been diagnosed with 19 chronic health conditions – and recently spent a week in a coma in the ICU
Meaghan has provided regular updates on her Instagram page, and in an emotional video, she opened up about the mental toll of living with chronic pain.
“I mourn the life I used to have because I realized I’m not getting that back, it’s never coming back,” she said.
‘I’m constantly hurt, what kind of life is this? I experience the impact this has on my family, on my husband, on me, on my future and my goals.’
In another post, she described the difficulty of wanting to be there for her sons.
“Every day I get up, I do my best to pull myself together, not for anyone else but for myself and for my children. I may look normal, but most days I need everything to get ready.’
The mother said something that touched her when her son in his kindergarten class was asked to draw a picture of what his parents did during the day.
“He pulled me into bed. That broke my heart,” she said.
“It’s for my kids that I fight to get stronger and healthier and find answers to why my body is failing me.”
Meaghan will now not only need cervical spinal fusion surgery to stabilize her neck, she will also need brain surgery to reduce pressure in her skull.
“My neck is constantly half dislocated when I move it. The surgery on my spine is to stabilize because the risk is that if I have a major seizure I could paralyze myself,” she said.
Ms. Kiely (pictured with her kids) has been posting regular updates on her Instagram page, and in an emotional video, she opened up about the mental toll of living with chronic pain
Her family has started a GoFundMe to raise money for the many medical procedures she needs
The recent diagnosis of the tumors in her brain and spine will also need to be addressed.
The family has yet to find out if the tumors are cancerous, but fly 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 mom hopes she can help shed the stigma surrounding chronic illness.
“Chronic illness is so difficult and isolating, and you feel so alone so often,” she said.
“You feel like you’re constantly fighting because you feel like people don’t believe you, but I want people with chronic illnesses to know that what you’re going through is real and it looks different for everyone.
“Don’t compare your experience with someone else’s and don’t think it’s less valid.”
Despite the horrors of the past year and more difficulties on the horizon, Meaghan is determined to keep fighting.
There’s no indication yet of what her recovery will look like, but she’s hopeful that her upcoming surgeries will ease some of the pain.
“If the blows keep coming…I’ll keep getting up,” she said.
Meaghan Kiely’s 19 Chronic Health Problems
Narcolepsy – a neurological sleep disorder characterized by chronic, excessive bouts of sleepiness during the day
Pituitary tumor – an abnormal growth that develops in the pituitary gland in the brain. Almost all of these tumors are non-cancerous
Degenerative disc disease C1-6 – the degeneration of a disc in the cervical part of the spine
Ehlers-Danlos syndrome – a group of conditions that affect connective tissue – most commonly the skin, joints, and blood vessel walls
Gastroparesis – a condition that affects the movement of muscles in the stomach. Symptoms can include nausea and vomiting
Chiari Malformation Type 1 – a condition in which the part of the skull that contains part of the brain is too small or deformed. This means that there is too much pressure on the brain
Eagle’s Syndrome – a condition characterized by chronic pain in the throat and face
Occipital neuralgia – a distinct type of severe headache in the neck, back of the head, and behind the ears
Eosinophilic esophagitis – a chronic disease of the immune system
Mast Cell Activation Syndrome (MCAS) – condition in which a person repeatedly experiences symptoms of anaphylaxis, such as hives and difficulty breathing
Dysautonomia – a dysfunction of the nervous system
Postural orthostatic tachycardia syndrome (POTS) – refers to the symptoms that come from a person sitting down to standing up. Symptoms include dizziness, fainting, and rapid heartbeat
Right ear semicircular canal dehiscence – an abnormal opening between the upper part of the inner ear and the brain
Widespread Pain Syndrome
Fibromyalgia – a condition where a person can experience widespread pain, fatigue and cognitive problems
Endometriosis – a condition in which cells similar to the lining of the uterus, or endometrium, grow outside the uterus