Mackenzie Webber on what life is like as a teen living with encephalitis

A Cairns teenager living with a chronic auto-immune disease, has not let the illness dim her zest for life despite the challenges of navigating a difficult diagnosis.

Redlynch teenager Makenzie Webber, 16, was diagnosed with the rare brain condition encephalitis in November 2018, after suffering headaches, blurred vision and memory loss. Picture: Brendan Radke

A Cairns teenager living with encephalitis, an auto-immune disease causes inflammation to the brain, has not let the illness dim her zest for life.

Mackenzie Webber, 16, who contracted encephalitis at 10 years old after a camping trip with her family, said she was grateful to be alive after she was diagnosed as a child.

“I was in Year 4 and we had just got back from a camping trip in Port Douglas and when we came back I thought I’d gotten a common cold and it went on for a week,” Miss Webber said.

“About two weeks later we started noticing some bizarre symptoms. There was changes in my behaviour, memory loss, I was hearing and seeing things, my speech was going funny.”

Eight months of blood tests, scans, and doctor’s appointments followed.

After undergoing a neuropsychology test, a nurse raised the alarm that something might be wrong in her brain and Miss Webber was admitted to Cairns Hospital.

“No one could figure out what was wrong because the tests kept coming back fine,” she said.

“The pediatric doctors at Cairns hospital wouldn’t let me leave until we got a diagnosis. So they did a lumbar puncture and sent the fluids to a lab in Sydney and we finally got the diagnosis,” she said.

Despite a 40% mortality rate and no cure, Miss Webber and her family, who have learnt to manage the effects of the illness, but said more work still needed to be done to raise awareness in the medical community.

Redlynch teenager Makenzie Webber, 16, was diagnosed with the rare brain condition encephalitis in November 2018, after suffering headaches, blurred vision and memory loss. Picture: Brendan Radke

“Encephalitis International do a great job, but awareness is super important because it allows a quicker diagnosis and less complications,” she said.

“Not knowing what was going on was scary. My mum said she didn’t sleep for eight months because she was worried so a quick diagnosis and making doctors aware of it because it’s getting more common is important.”

Due to lasting side effects and missing a large portion of her education due to medical appointments, Miss Webber now studies remotely, which she said impacted her social life and ability to maintain friendships.

“It’s meant having to restrict activities with my friends like going on sleepovers. It’s taken a big chunk of my childhood away and made me worry about things no child should have to worry about.”

Despite the challenges, Miss Webber continues to look at the bright side of life and wants to work in medicine, helping children who are diagnosed with chronic illness.

According to Dr Ava Easton, chief executive of Encephalitis International, encephalitis is a mosquito-borne disease, however, it can also occur following infection from everyday viruses and also results when the immune system attacks the brain in error.

World Encephalitis Day, observed by Encephalitis International, is held on February 22 in an effort to raise awareness on the disease.

Originally published as Mackenzie Webber on what life is like as a teen living with encephalitis