'It’s really starting to scare me.' Reggie Bird has given an update on her rare degenerative disease.

It's been 21 years since "Aussie battler" Reggie Bird won Big Brother season three in 2003.

Not only was she the first woman to win the $250,000 [season one was won by Ben Williams and season two by Peter Corbett], but, many seasons later, she still holds the record for the largest margin in the finale - a whopping 72 per cent of the votes were for her.

Then in 2022, Bird won Big Brother again after competing as an all-star housemate.

Speaking to No Filter podcast host Mia Freedman, Reggie recalled the "madness" of the night she won in 2003.

"Oh my goodness, that was crazy! Coming out of the house and walking onto the stage with screaming fans... It was bizarre because I'd been locked away for three months [in the house]," she told Freedman.

"And then all of a sudden it's just like 'Whoa, this is insane'. It was so mad, crazy mad. And it was all fuzz, like my head was really fuzzy.

"That's how I always remember it; it's when a television has gone off air and you had the black and white fuzz. That's what my head was like at that time. It was just all madness."

Listen to Mia Freedman's full interview with Reggie Bird on the No Filter podcast below. Post continues after audio.

Despite winning Big Brother twice, Reggie's life hasn't been all sunshine and roses. In fact, she went through a series of terrible lows.

While she was able to pay off her mortgage with the $250,000, her marriage to husband (and fellow fish and chip shop owner) Adrian fell apart.

A year after the show, Reggie was diagnosed with a degenerative eye disease called retinitis pigmentosa, which is a genetic condition causing loss of vision and blindness.

After being told she had the eye condition by the ophthalmologist, Reggie "didn't take notice of it. It didn't even sink in what it was."

It wasn't until she moved to the Gold Coast and had her daughter, Mia, with her second husband Dale, that she realised how serious the eye disease was.

"[Mia] started crawling, and I'd never see her. I kept tripping over her and kicking her on the floor and I'm like, 'oh my goodness'. Dale said, 'Go and get your eyes looked at again'," Reggie told No Filter.

"So I went, and the ophthalmologist said, 'You need to stop driving right now. You cannot drive.' And that's when they said, 'You've got no peripheral vision.' I can't see beside, below, above, the low above, and [I have] no night vision."

In a new interview on the Mental As Anyone podcast in December 2024, Bird has given an update on her vision, admitted it is "like looking through a straw," and she's worried it will turn into complete blindness.

"It won't kill me, but I am going to lose the whole lot," Bird said.

"When that day comes, I don't know what I am going to do. It's really starting to scare me because I feel like my eyes are really getting worse."

After falling pregnant with her second child, Lucas, Reggie underwent emergency surgery due to an ectopic pregnancy [when a fertilised egg attaches outside the uterus].

Lucas was born with cystic fibrosis.

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A post shared by Regina Sorensen (@reggiebirdbb)

"Straightaway, our hearts just sunk," she says of receiving Lucas's diagnosis.

"It’s a lung disease, but it affects the whole digestive system, like his liver, his kidneys, his pancreas doesn't work. So he has to have enzymes before he eats and drinks certain foods... before all foods pretty much. He has to have a high fat, high-calorie diet, because it's very hard to put on weight.

"And he has physiotherapy every day because the mucus sits in their lungs and it gets stuck in their lungs. And that's when bugs form and you know, they can end up with lots of infections and end up in hospital."

Bird also went through serious medical issues of her own: in 2017, she had a stroke due to a heart condition.

To add to the stress, she and her family were almost evicted from the home they shared because of the soaring costs of all the medical bills for both Lucas and Reggie.

Watch: Big Brother 2022 trailer. Post continues after video.

This was not the first time Reggie was under financial pressure. Back in 2005, she was swindled by a conman and lost $40,000.

"I was here in Sydney and I met this guy who I thought was a TV producer," she explained to No Filter. "We filmed a TV pilot thing together, like a travel show. And this is where the money ended up going.

"So he said he’d just come back from LA and he was waiting to get paid from some acting job that he did and he goes, 'Oh, can I borrow $5,000?'... I said, 'yeah, no worries'. And then it was, ‘Oh, we need another five grand’ and then '10 grand', and then another '10 grand'.

"And then I'm like, ‘OK, this is not right’. I should have probably realised at five grand, you know, but I was just so naïve... and then yeah, off he went, nicked off. I can't remember if he left his job or got kicked out of where he was living. And yeah, he was gone. Just gone."

The combination of paying off the mortgage, being scammed, not being able to hold down work, and paying rent, meant money became very tight.

"It was a real struggle," Reggie admitted.

After winning Big Brother earlier this year, Reggie has now shared she's been diagnosed with a rare genetic disease.

In an emotional video posted on Instagram in 2022, the 48-year-old announced she has Usher syndrome, which affects both hearing and vision.

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"It's not what I wanted to hear," she said in the video.

"It's the worst thing that you could have. I'm going to be deaf-blind."

In a separate Instagram post, the mother-of-two shared the diagnosis was "an absolute kick in the guts" but she's going to "turn it into a positive and do a bucket list".

This article was originally published on October 14, 2022 and has since been updated with new information.

Feature image: Instagram/@reggiebirdbb.