Ms Webb called FFI their “family curse” in an interview with 60 Minutes, and said no one knows when the disease will strike.
“My grandma started getting sick and dying. Her eyesight went, she had signs of dementia, she was hallucinating and couldn’t talk,” Ms Webb said.
“Eventually she was diagnosed with FFI, that was the first time the family even knew that FFI existed.”
There is currently no remedy for the disease, but the pair are currently taking part in a US university study to help find a cure, reports Mail Online.
“I don’t want to sit here while the sands through the hour glass pass waiting for it to trigger and for me to cark it,” she said.
“I want information, I want answers and I want a bloody cure.”