Online information and support groups can be great places to link with others who are in a similar situation. This can help reduce feelings of isolation often experienced by people suffering silently with persistent lower urinary tract symptoms (LUTS). Online groups allow for the sharing of information and personal experiences and are good places to access support—or to support others. We had a chat with the administrators of the Chronic and Recurrent UTI Support Group (Australia and New Zealand)—a Facebook group focused on science-based discussions around diagnosis and treatment for chronic UTI. The group has a strong emphasis on exploring solutions to overcome the challenges of accessing treatment in our region. Online support groups are not for everyone but they can play a helpful role for many people who are seeking information and support.
We are thrilled to release our 2021 Australian-exclusive interview with Professor James Malone-Lee discussing chronic urinary tract infection (UTI). Professor Malone-Lee has nearly four decades of experience researching UTI and treating thousands of patients with bladder conditions. He shares information from his book Cystitis Unmasked in response to questions from an all-Australian panel featuring urologist Dr Anita Clarke, pelvic physiotherapist Alyssa Tait, chronic UTI patient representative Melinda Brown and Chronic UTI Australia's chairperson, Imelda Wilde. Read more below from Imelda about the interview.
We are thrilled to announce that Chronic UTI Australia Inc. and Sarah Willmott from Feel Better Box have joined forces to tackle the growing problem of urinary tract infections (UTIs). Sarah is no stranger to UTIs. Like so many others, her experience started innocently as a teen with the occasional post-coital UTI. It wasn't long before her UTIs turned into bouts of frequent and regular recurrent UTIs spanning several decades. When searching online for answers, she came across Chronic UTI Australia. Sarah knew instantly she wanted to involve her successful business that helps Australians feel better, to help raise much needed awareness of recurrent and chronic UTI. This year Sarah and Feel Better Box has partnered with Chronic UTI Australia as a sponsor. Read more about Sarah below.
Dr Nicky Thomas is a Senior Research Fellow at University of South Australia and The Basil Hetzel Institute for Translational Health Research, where he works on developing nanomedicines to treat infections that have become resistant to traditional antimicrobial therapies. Among other concerning and challenging chronic bacterial infections, Dr Thomas' team has an interest in improving the delivery and efficacy of antibiotics in people suffering chronic urinary tract infections (UTI).
To be diagnosed with a chronic UTI in Australia is no mean feat. Chronic UTI is a largely unrecognised and misunderstood condition. It is common for people with these chronic infections (who are predominantly women) to be referred through the medical system—sometimes for years and even decades. They see numerous specialists and have multiple tests, often walking away with a urinary syndrome diagnosis. Ongoing symptoms and pain management is usually the best that can be offered. For these people, the future can be bleak. This month we talk to five Australian women who have long-suffering UTI histories of between one and 35 years. Through their perseverance, each of these women found their way off the medical merry-go-round and were finally diagnosed and properly treated for a chronic UTI. Read more to find out how they reclaimed their lives and found their way back to health.
Evann Hilt is a young American scientist who has helped change the course of history. Working with an intelligent, tightknit group at the Loyola Urinary Education and Research Collaborative (LUEREC) in Chicago, USA, her work on the human bladder resulted in the 2014 ground-breaking discovery of the bladder microbiome—dubbed the female urinary microbiota (FUM). This discovery not only dispelled decades of incorrect assumptions that urine is sterile, but it also highlights fundamental flaws in urinary tract infection (UTI) diagnostic tests used throughout the world today. The existence of the FUM is forcing scientists, microbiologist and clinicians to re-think everything previously accepted about urinary tract health and disease, including what causes UTIs and how they are best diagnosed and treated. Evann’s important work now opens up life-changing possibilities for those living with UTIs and other urinary disorders. Although it could still be some time off, she anticipates her work will give clinicians new safe and effective non-antibiotic therapy options that will return the resident FUM to a healthy and harmonious state. You can read more about Evann's exciting research in our 2018 interview.
(Above image: Dr Alan Wolfe and Evann Hilt analysing culture plates at the LUEREC lab, courtesy of LUEREC.)