The story of Selena Gomez’s battle with lupus disease has resurfaced in recent news due to her latest appearance in Australia.
Last year, the young American popstar disappeared from the public eye to undergo chemotherapy and a kidney transplant as a result of the disease.
Lupus, like the other 100 known autoimmune diseases, creates antibodies that attack the body, mistaking it as a threat. But why and how this happens still remains a medical mystery.
According to the Australasian Society of Clinical Immunology and Allergy (ASCIA), autoimmune diseases affect around five percent of people and are more common than cancer and heart disease.
Kyla Wadeson, 13, of Woy Woy, Central Coast is one of many Australians living with an autoimmune disease.
“To look at her you wouldn’t know she’d had anything wrong with her,” said Fiona Wadeson, Kyla’s mother.
Kyla comes across as a happy, healthy teenage girl who loves reading Harry Potter and enjoys the company of her dog Bosco.
But beneath the surface, she lives with a life-threatening condition known as anti-NMDA receptor encephalitis; a rare neurological autoimmune disease that causes psychiatric episodes, involuntary muscle movement and memory loss.
Kyla was described as a well child up until the age of three when her illness began to unfold.
“The teachers rang me at work from preschool to say she’d fallen over and she was walking funny,” said Fiona Wadeson, Kyla’s mother.
“Then on the weekend we had my nephew’s second birthday. She was on the swing and she just started hysterical screaming. It was like she was having a tantrum.”
Being a registered nurse, Fiona knew that something wasn’t quite right. Five days after her initial symptoms, she said Kyla would have random screaming outbursts and was unable to stand.
“We went up to Gosford Hospital and saw a doctor and then went to the Emergency Department to get all the scans there like CT, MRI, lumbar puncture,” Fiona said.
“We stayed there overnight and did some more testing and then just went down to Westmead straight away because they had no idea. Everything came back normal at that stage.”
For the first four weeks at Westmead Children’s Hospital, Kyla’s brain scans continued to appear normal. At the time, doctors diagnosed her with Sydenham’s chorea, which is an involuntary movement disorder, but as her symptoms grew more complicated the diagnosis became unclear.
Following her third birthday, Kyla had her first seizure and lost most of her bodily function.
“She ended up going to the point of not talking, not walking, not eating. She was vacant,” Fiona said.
“I remember she was lying in the bed and the doctors were asking her questions like her favourite colour and it was always pink and purple, but she couldn’t get the words out.
“Then she had to go back into nappies because she lost control of that too.”
Despite remaining positive throughout the diagnosis, Fiona admitted there were moments that hit close to home.
“Up at Gosford, the doctor said the last girl he scanned ended up having a brain tumour and, lo and behold, we get down to Westmead and she’s in the bed next to us,” she said.
“You’re freaking out because you’re thinking the worst… but I think I was still in shock.”
What Fiona anticipated to be a few days in Westmead Children’s Hospital ended up being three and a half months. Her husband Shawn came down in between work with their eldest son Joshua to visit Kyla on the weekends.
She said her darkest moments were not knowing where and how Kyla’s symptoms would occur and if her daughter’s condition would improve.
“You just didn’t know what the outcome was going to be…whether or not she was going to have some damage or not get back to being normal.
“I was always trying to be positive and think, no this will be fine. She will get better,” she said.
From Kyla’s fifth lumbar puncture, doctors uncovered traces of protein that showed inflammation in the spine.
Advanced electrical scans of her brain also revealed evidence of auto-antibodies that were positive against NMDA receptors, meaning her body was attacking parts of the brain that control activities such as breathing and swallowing.
After 12 months the doctors diagnosed Kyla with anti-NMDA receptor encephalitis.
“They [the doctors] gave her lots of different medications and lots of steroids. She had these different meds, like epileptic meds. They’re good for movement problems and she had a lot of antiviral and antibiotics,” Fiona recalled.
“We did a lot of occupational therapy up at Gosford Hospital in the children’s centre for fine motor skills, like cutting, colouring in, pasting, because she lost of a bit of that.”
Between 2008 and 2012, Kyla suffered four further relapses where she experienced sudden outbursts, emotional instability and language difficulties, such as slowed speech. She was treated with an intravenous immunoglobulin (IVIG) to help fight the disease, but each relapse was different.
“She got to a point where she was continually moving. They had to sedate her of a night time, so she could sleep,” Fiona said.
“She was kind of walking…but she did have a wheelchair.
“Every time she has a relapse there’s always a chance that there’s going to be damage to the brain.”
Following her last episode in January 2012, Kyla took an immune suppressant called mycophenolate to avoid further relapses.
She stopped using the drug in September 2014 and has remained relapse free ever since. However, Kyla still has difficulties with her short-term memory.
“Sometimes within five minutes she’ll forget, but she knows her memory’s not well,” Fiona said.
“She still does dancing and netball and sports and that’s good for her coordination. Dancing’s good because you need a lot of memory to remember everything.”
Because little is known about the rare disease, Kyla took part in a research case study that assesses the neuropsychological profile of children with auto-immune encephalitis.
While her verbal intellectual skills showed to be just below average, her performance with non-verbal tasks and cognitive skills, such as reading accuracy and numeracy, were within the normal range.
“She still does tutoring for maths and we might try and do some language as well. It’s more so making up a sentence or writing stuff, but reading’s fine. She’ll read like nothing else,” Fiona said.
While regular visits to Westmead have ceased, Fiona remains in contact with the doctors. She is also a member of the ‘NMDA Antibodies support group – Australia and New Zealand’ on Facebook where she can access information and support from other people living with the disease.
She said the biggest challenge they will face in the future is the unpredictability of the disease and not knowing if Kyla will relapse again.
“As long as she can get through and do things like everyone else to whatever degree,” Fiona said.
“We just have to wait and see.”
Fiona has put together the footage of Kyla and their interview from ABC’s ‘The 7:30 Report’ in September 2013.
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