Wollongong Woman Opens Up About Fatal Brain Disease Diagnosis

Tina Floro, second from left, with her granddaughter Saskia Yule, mother Josephine Dunn, and daughter Paula Giraldi. Picture by Robert Peet It started with some confusion: Tina Floro would forget where she'd parked her car, or she would not know where to sit in the office, even though she used the same desk every day. Subscribe now for unlimited access. or signup to continue reading Holiday Offer All articles from our website & app The digital version of Today's Paper Crosswords, Sudoku and Trivia All other in your area She put it down to the high levels of stress she experienced in her job in child support. But days before Christmas, the 58-year-old received the crushing news that she had a very rare and fatal brain disease known as Creutzfeldt-Jakob disease (CJD). CJD occurs when infectious proteins damage the brain and cause it to become spongy, which leads to dementia and death. The disease progresses quickly and usually claims a person's life just months or even weeks after symptoms emerge. Overwhelming news In Ms Floro's case, it was about 10 months ago she noticed symptoms, which along with the confusion and disorientation included uncharacteristic mood swings and intolerance to noise. Then one day in late November 2024, a colleague at work became concerned Ms Floro was having a stroke, so she went to hospital. However, a stroke was quickly ruled out, and doctors as carried out tests, they worked their way down the list of possible conditions until they arrived at CJD. Weeks later, on December 19 - the birthday of one of her six grandchildren - Ms Floro was told to get her family together to receive the results. It came five years after one of her daughters, Paula Giraldi, received her own frightening diagnosis of stage four breast cancer, from which she is now in remission. After getting the news, Ms Floro was connected to palliative care, saw psychologists, and had meetings about voluntary assisted dying (VAD). Ms Floro said it was "so overwhelming" to face her own mortality like that. But she has spoken about her experience with CJD to raise awareness of the condition. 'Too much to live for' The sister of Ms Floro's daughter-in-law, Emily Thompson, has started an online fundraiser to ensure the family can spend time together without worrying about the financial impost. "Right now, what matters most to Tina is spending as much time as possible with her loved ones while she still can," Ms Thompson wrote on GoFundMe. While Ms Floro can take care of herself at the moment, her family have just signed a lease on a bigger property at Primbee so they can be together for whatever time is left. Ms Floro has three children and six grandchildren in the Illawarra and Shoalhaven, and her mother, Josephine Dunn, has relocated to Wollongong from Tweed Heads. "I've got too much to live for," she said. Her daughter, Ms Giraldi, said they were taking each day as it came. Rare disease As well as her family, Ms Floro has the support of her GP, who has referred her to a neurologist specialising in degenative diseases, and a national group for people with CJD, which has provided information and pomegranate tablets containing omega 5, which research suggests could help slow progression of the disease. She has been taking the tablets for only a few weeks but already notices a difference in the fogginess she had experienced. She and her family are also optimistic that the fact she has been living with symptoms for the better part of the year might mean her CJD is progressing slowly. Most cases are sporadic and happen for no known reason, but the disease can be inherited or acquired during certain invasive medical procedures. A variant is linked to eating meat from cows with mad cow disease, although no such cases have been recorded in Australia. 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