NRL, rugby league legend depression, epilepsy diagnosis


Rugby league icon Wally Lewis famously had an epileptic seizure live on air while reading the sport for Channel 9 news in Brisbane in 2009.

The episode finally forced the 61-year-old to have the brain surgery he had done everything possible to avoid.

The operation to remove a piece of his brain 5cm by 3cm has always been credited as the moment his life was saved.

In many, many ways, the operation saved his life. But his ongoing depression battle followed him beyond his surgery.

It took a committed routine of antidepressants to finally reveal the true Lewis.

The true Lewis was a friendly, caring, gentleman — a man many of his teammates never knew existed.

It’s because Lewis’ secret epilepsy diagnosis was hidden from almost everyone until his on-air episode on Channel 9.

He kept the secret for 21 years from everyone outside his family and a couple of Queensland teammates.

He has previously talked about how the secret weighed him down. How it left him depressed.

He revealed 11 years ago the condition was triggered by repeated concussion cases, beginning from the age of 19.

Hiding his secret for so long consumed Lewis.

He has revealed further details of his traumatic journey in his new autobiography My Life: Wally Lewis.

Lewis’ mental health battles didn’t end with the surgery.

“I had suicidal thoughts and found myself crying uncontrollably, for no reason,” he says in the book, as first reported by The Courier-Mail.

“I needed someone with me at all times.”

In the book he reveals his darkest moment.

He admits to walking out onto the private pontoon out the back of his Brisbane home and wanting to jump in.

“Another time I walked down to the pontoon on the canal at the back of the house and considered jumping in,” he says.

“The thought was actually there – that day. If I was going to suicide that’s when I would have done it. (Jackie) never left me alone after that.”

Between the surgery, his medication and his famous fighting spirit, Lewis, was a new man within months.

He was back reading the news on Nine 10 months later.

It has still been no picnic.

He revealed in 2017 the surgery has left him with restricted language and cognitive skills, acute memory loss and painful headaches.

The ongoing struggle hasn’t stopped the true Lewis from showing his true colours.

He smiles warmly now like he never did during his 21 years of secrecy.

His friends now smile back knowing they’ve finally got their mate back. The King was back.

My Life: Wally Lewis, $39.99 from QBD and Dymocks. Limited hardback signed copies, $59.99 at www.stevehaddan.com.au



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Even today, epilepsy is still misunderstood


EPILEPSY, PAST and present, has been stigmatised due to varying beliefs, magnitudes and discrimination.

Hammurabi’s code, as proclaimed by Babylonian king Hammurabi – who reigned from 1792 to 1750 B.C. – proscribed that a person with epilepsy could not marry, nor could they testify in court. When the fight against the supernatural and the occult started in the 17th-century, epilepsy was seen as a demoniac influence.

In the 18th century, epilepsy was seen as contagious and people were not to associate with people with the condition. By the early 19th century, people with epilepsy were labelled as insane and locked in asylums. 

Fast forward to the present. In 2011, a study from North America investigated epilepsy stigmatisation as it occurred on social media. Unbelievably, the study found that out of almost 11,000 tweets, 41 per cent were derogatory. Although this study is nearly ten years old, epilepsy is still widely misunderstood and stigmatised, even in 2020.

Both globally and nationally, there are a significant number of people living with epilepsy. Worldwide, it is estimated to be the upper end of 65 million people. Meanwhile, nationally, approximately 250,000 Australians are currently diagnosed with epilepsy. This figure makes epilepsy more common than Parkinson’s disease, cerebral palsy and muscular dystrophy combined. Yet, despite this high proportion, epilepsy is viewed by some as an intellectual disability.

I am one of around 250,000 Australians living with epilepsy. I also sit within the 30 per cent bracket of people who cannot control their seizures with anti-epileptic medication. The seizures I suffer from are tonic-clonic, tending to be the most universally recognised seizures.

The body becomes quite stiff (tonic) shortly followed by jerking of the muscles (clonic). It generally lasts no longer than two minutes. Typically, the seizure is followed by a period of confusion, with headaches and soreness common afterwards, lasting up to two weeks. As there are no warnings and no predictability associated with the seizures, I can’t drive — and I can’t get myself to a safe place before the onset of a seizure occurs.

Occasionally, when people discover I have epilepsy, they tend to see me as less equal to them. Yet, epilepsy is certainly no barrier to achievement. Leo Tolstoy, Charles Dickens and Tchaikovsky are all thought to have had epilepsy. Admittedly, some life changes are necessary, but many people with epilepsy are able to lead full and productive lives.

In my view, my epilepsy doesn’t define me, but my personality certainly is primed from the experiences associated with hardship from the seizures.

The majority of the time, however, my seizures do not comprise my personal attributes. For every day of seizure freedom, I feel grateful (in comparison to people who moan about having their three week Mediterranean holiday cancelled due to the current pandemic). Although I can’t control my seizures, I can control my attitude and be grateful my epilepsy has shown me how ignorant people can be, as it shows me exactly how not to behave.

It is generally well known that stigma and exclusion are common feelings associated with epilepsy and are major contributors to the burden associated with the condition. At times, surrounding my seizures, I do feel the insensitivity and ignorance from co-workers and even friends. Certainly, in my workplace, it has been awkward and isolating.

One of the things I have found most offensive is when my healthy co-workers interject my epilepsy with humour — which is likely due to lack of awareness surrounding my struggles with epilepsy and not malicious intent mocking my condition.

My first round of neurosurgery in 2019 involved having probes implanted into my brain with a surgical drill. “Could’ve used the Makita for that,” one co-worker joked. “How was your brain transplant,” was one comment delivered after my return to work, following the second round of neurosurgery (which consisted of having a sizable portion of my left frontal-lobe removed). If only they’d suffered what I had, there would be nothing to quip at.

Another time, when discussing heavy metals exposure and the correlation with Alzheimer’s disease, a co-worker quipped, “well you can always have another section of your brain removed”. Consider if you had your left breast removed due to cancer. No-one would joke about having the other breast removed. Which brings another question: If, in 2020, epilepsy is classified as a serious medical condition, why do some people think it is something to find humorous?

 Nothing to laugh at — post neurosurgery (photo supplied)

Eventually, my co-workers realised – through my educating and creating awareness about epilepsy – that although seizures are a part of me, they do not define me. This realisation took months and was as equally about my being embarrassed by my seizures as it was about my co-workers accepting them.

Occasionally, I need time off for an appointment with my neurologist, but no more than a working Mum who needs to go to a school assembly.

Society is finally at a place where we no longer believe that epilepsy was challenged as part of the fight against the supernatural — as we did in the 17th century. In the 21st century, we know epilepsy is caused by genetic influences, head trauma and brain conditions, like tumours or strokes. Instead of treating epilepsy with magic, we treat it with diet and drugs. Yet, with the way some view and perceive epilepsy, there is still so much further we need to come. 

Reducing the stigma of epilepsy is key to improving individuals’ life opportunities and quality of life. In my experience, by working towards educating my co-workers about epilepsy, certain stigmas and preconceived notions surrounding it were lifted and epilepsy stereotypes debunked.

So, if you think epilepsy is a disability that defines someone or is something to jibe at — it isn’t. A point worth considering, the next time you interact with someone with epilepsy.

 

To learn more about epilepsy and about research and funding for the treatment of epilepsy, you can visit Australian Epilepsy Project.

Alyce Sala Tenna lives in Perth, Western Australia. Outside of managing her epilepsy, Alyce works at a consultancy as an environmental scientist.

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Sanofi being investigated for manslaughter over epilepsy drug Depakine


French pharmaceutical giant Sanofi is being investigated for manslaughter amid a scandal over its epilepsy drug Depakine.

The firm is accused of being late to reveal the risk the medication poses to pregnant women.

Health authorities say when mothers-to-be took the drug they increased the chances of their children having birth defects, autism and learning difficulties.

Sanofi insists it had fulfilled its obligations in terms of informing people about the side-effects of Depakine

The medication, mainly composed of sodium valproate, is used to treat seizures but has also been widely employed as a mood stabiliser to help people with bipolar disorder.

The French drugs agency (ANSM) estimates that Depakine could be the cause of birth defects in 2,150 to 4,100 children and slow neurological development in 16,600 to 30,400, since 1967.

Today’s development comes after an inquiry initiated by the organisation (APESAC), which represents alleged victims of the scandal.

Marine Martin, president and founder of APESAC, called it “a great victory for the families of victims of Depakine”.

Sanofi has already been indicted for aggravated fraud and unintentionally causing injury over the use of the drug.

According to the daily newspaper, Le Monde, the aim of the investigation is now to determine whether the pharmaceutical company can be held responsible for the death of four babies (in 1990, 1996, 2011 and 2014), whose mothers took Depakine during their pregnancy.

Last month, a French court found the state, Sanofi and doctors who prescribed the drug responsible in the case. It ordered the state to pay thousands of euros in compensation to families, saying officials didn’t take the necessary measures to ensure the drug was not taken by pregnant women.



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Jack Trewin’s sudden death sparks push for epilepsy awareness


Like many 16-year-old boys, Jack Trewin loved fast cars, mountain bikes and his woodwork class.

The Hobart teenager died suddenly last month, leaving behind his heartbroken parents, Penny Flanagan and Simon Trewin, his siblings, and a school community he was much loved by.

“His massive thing was cars, he’d go around the caryards and sit in Porsches,” Ms Flanagan said.

Jack had epilepsy and autism.

The exact cause of death is still unknown.

Half of all epilepsy-related deaths are sudden and without a known cause.

“He died in bed,” Ms Flanagan said.

“I found him in his room.

Ms Flanagan wants to raise awareness of epilepsy and the services that are available to help those living with it, as well as their families.

Penny Flanagan with her sons Gus, Max and Jack.(Supplied: Penny Flanagan)

‘It started as night terrors’

Jack wasn’t diagnosed with epilepsy until he was 13.

“It started as night terrors and they kind of evolved later, through his early teens,” Ms Flanagan said.

“He ended up having full-blown seizures ranging from anything from an absent seizure where you stare off into space, down to basically having a fit on the floor.

While medication helped get the seizures under control, his parents couldn’t always monitor his condition when he went to bed.

A boy wearing a cap holding a yellow 'L' plate.
Jack was pleased with himself after getting his learner’s licence.(Supplied: Penny Flanagan)

More research needed

There are 800,000 Australians living with epilepsy, including 20,000 in Tasmania.

Epilepsy Tasmania estimates one in five Tasmanians are affected by the condition through friends and family.

For those with epilepsy, Sudden Unexpected Death in Epilepsy (SUDEP) accounts for 1 in 1,000 adult deaths per year and 1 in 4,500 deaths in children.

SUDEP occurs most frequently at night when in bed or during sleep, and isn’t due to a physical injury from a seizure.

It is an area that epilepsy groups want more research on.

Jack’s final ride

Due to COVID-19, only 50 people were allowed to attend Jack’s funeral.

It was a world away from Ms Flanagan’s wedding in January, when Jack walked her down the isle and gave her away.

Ms Flanagan said it was heart-wrenching for his close-knit school community to not be able to attend the funeral.

“There were so many kids at school who wanted to say their goodbyes,” she said.

To honour his love of cars, dozens of Porsches escorted Jack to the crematorium, and the funeral included music from the movie Fast and the Furious.

In lieu of flowers, the family called for donations to Epilepsy Tasmania, and his grade 10 peers also raised thousands of dollars.

The money will go back to families living with epilepsy, and help fund a new telephone service to support people during COVID-19.

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‘There is a condition where epileptic children just pass away’: Mother shares experience of losing 16-year old son during the coronavirus pandemic
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Reaching out during COVID-19

Epilepsy Tasmania chief executive Wendy Groot said like most vulnerable people in the community, COVID-19 had been a challenging time for people with epilepsy.

“People with epilepsy already feel that they are isolated and that they are physically and socially distanced from people,” she said.

“The impact of the COVID-19 virus has meant that has increased.”

A boy wearing a cap holding a knife and fork
Steak was one of Jack’s favourite foods.(Supplied: Penny Flanagan)

Ms Groot said many health services were now done through video or phone, and specialist neurologists weren’t able to visit Tasmania.

“People with epilepsy have trouble with moods and memory and communication,” she said.

“Doing it through a telephone means they aren’t getting the best health outcomes they require.

Epilepsy Tasmania has set up a new telephone service to make contact with patients to ensure they can access to the services they need.

“We’ve been actively calling people when we wouldn’t normally be speaking to them,” Ms Groot said.

Part of the money raised in the wake of Jack’s death will help fund the service, and Ms Flanagan hopes more people will become aware of the services they can access through Epilepsy Tasmania.



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