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Alexandra’s story

Alexandra’s story

When I was little and scared at night, I couldn’t find my mum. I couldn’t see.

For as long as she could remember, Alexandra has worn glasses and lived with a worrying deadline hanging over her.

“I had been seeing my specialist since I was little and it was always like, ‘you have retinitis pigmentosa, you will go blind,’” says Alexandra.

Retinitis pigmentosa is a degenerative, inherited eye condition which affects the retina, resulting in progressive vision loss at varying rates.

It wasn’t until Alexandra started seeing Associate Professor Fred Chen at age 13, that she started to have hope. Associate Professor Fred Chen and his team of researchers identified the exact genetic change responsible for Alexandra’s condition, paving the way for future development of personalised treatment. Thankfully, this has also revealed that her sight is still fairly stable.

In a race against time, Dr Livia Carvalho is seeking a broad-based treatment for retinitis pigmentosa, regardless of the genetic cause. With her team she is testing a certain gene-product regulating drug which might prevent the damage from these abnormal genes. She’s also exploring ways to replace the missing or mutant genes in the eye.

“That has given me so much hope for the future,” says Alexandra.

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