'Big Brother' Winner Reggie Bird Reveals Usher's syndrome Diagnosis: 'The Worst Outcome'

The two-time Big Brother Australia winner revealed she has the rare genetic condition Usher's syndrome and will lose her vision and hearing

Reggie Bird Instagram
Photo: Reggie Bird Instagram

Reggie Bird, two-time Big Brother Australia winner, is sharing an upsetting health update.

On Thursday, the 48-year-old revealed in an emotional Facebook video that in August she learned she has Usher's syndrome.

Usher's syndrome is a genetic condition characterized by partial or total hearing loss and vision loss that worsens over time. The vision loss is caused by an eye disease called retinitis pigmentosa (RP), which affects the retina, the light-sensitive tissue at the back of the eye.

Bird was previously diagnosed with RP in 2008 and declared legally blind, noting that doctors didn't know the cause. She had genetic testing done 13 years ago but only this year did experts have the proper technology to analyze it and find her "genetic link" to the condition, ultimately learning that it was Usher's syndrome.

"It's awful, it's not what I wanted to hear," Bird said in the clip before breaking down in tears. "It's the worst thing that you could have. I'm going to be deaf-blind."

"There are no clinical trials here in Australia and they're just starting some in America, so there's nothing that can be done," she added. "It's a rare genetic condition to have."

Bird said she has type 2 Usher's syndrome, which is characterized by moderate to severe hearing loss in early childhood, loss of night vision by teenage years with severe vision loss by midlife, and normal balance, according to the National Eye Institute.

"I don't know how long it's going to take for me to lose all my hearing," explained Bird, who recently revealed she has no peripheral vis­ion, no night vision, and her overall field of vision is constricted to only 9 degrees.

The reality star also learned that the "silver lining" of the diagnosis is that the disease is autosomal recessive, meaning it's less likely for her children to have it. The Big Brother star, who won seasons 3 and 14 of the show, is mom to two children, daughter Mia, 15, and son Lucas, 12.

Bird is dealing with her diagnosis day by day and trying to maintain a positive outlook, sharing that she's created a bucket list and wants to travel with her kids and see and hear as much as she can with the time she has left.

"It's the worst outcome that could've come about from my genetic testing but, you know, life goes on and you've got to make the most of each day. I'm going to have some fun, I'm going to get fit again…That's gonna be my motivation."

"There's a lot more to come of Reggie, so stay tuned," she added. "I've got so much to tell."

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