Kylie shines a light on NF

Kylie Webb is dedicated to raising awareness for Neurofibromatosis. Picture: CONTRIBUTED

By Brendan Rees

When Kylie Webb attended a Kasey Chambers concert about five years ago little did she expect a severe tinnitus would change the course of life weeks later.

“I thought that I had sat too close to a speaker because I had ringing in the ears for the next four weeks; it was just constant, so that’s what made me go to my doctor and start looking into it,” the 37-year-old said.

After various medications failed, Ms Webb of Cranbourne West underwent an MRI – with her doctor assuring her he didn’t “expect anything” serious to come back.

But her worst fears were met when the results showed two acoustic neuromas, a benign tumour that grows in the canal connecting the brain to the inner ear.

Ms Webb, who was diagnosed with Neurofibromatosis Type 2 (NF2), a genetic disorder characterised by the growth of noncancerous tumours in the nervous system, had one tumour removed, leaving her deaf in her left ear.

She decided to leave the other tumour in her right ear and have regular MRIs to monitor its growth so she wasn’t completely deaf.

Today, she is passionate about raising awareness about Neurofibromatosis – with high hopes of a cure being found.

May is also NF Awareness month – with an array of events held to ‘shine a light on NF’ and 22 May being the official World NF Awareness Day.

“Most people have never heard of NF and for me it’s a hidden disability; people can look at me and not know that there’s anything wrong,” Ms Webb said.

She spoke of an upsetting experience when she visited a pharmacy recently and tried to get the attention of staff wearing masks.

“I had said to him ‘I don’t know what you’re saying to me, I’m really sorry, I’ve got a hearing impairment’ and he refused to pull the mask off and he actually ended up walking away.”

Ms Webb said she’s learnt to live with chronic pain and without painkillers she “probably wouldn’t get out of bed each day”.

But she counts herself lucky that she has a job in public health with a supportive workplace.

“They know they can’t talk to me from behind me – they need to have my attention before they can talk to me.

“I’ve also turned the desk around too; I can see anybody that comes into the office.”

Ms Webb has begun a “sound bucket list” of 10 events she hopes to attend – one of which is hearing the pipe organs being played at Sacred Heart Cathedral in Bendigo, which she has organised for Saturday 23 May.

Meanwhile, Ms Webb is making penguin cards to support the Children’s tumour Foundation, the only charity in Australia that supports children and their families with NF.

The cards can be purchased at Kylie’s Full Deck of Cards Facebook page. 

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