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Edition 4 2015 EDITIONFOUR 2015 IN THIS ISSUE MENTAL HEALTH AND WELLBEING What’s happening in the world of Cystic Fibrosis Western Australia CEO MESSAGE FEATURES HEALTH & RESEARCH 4 > CFA Update 5 > Conference Lay Mental Health CONTENTS Program Now on Video 6 > Psychosocial Aspects of Lung Transplantation in the Cystic Fibrosis (CF) Population DEADLINE FOR and Wellbeing NEXT ISSUE 8 > PHD Top Up Scholarship If you would like to contribute The ageing of the CF population 9 > Using Your Skills, Knowledge to our next issue, please is rightly seen as a triumph of the and Experience to Improve contact us before 29 multidisciplinary-team approach to Your Child’s Health (or Your Own) January 2016. treating CF. MICROBIAL MONSTERS > Microbial Monsters Not so many years ago, issues like 10 DO WE HAVE family planning, retirement and career YOUR CORRECT development didn’t even make it onto 12 > Anxiety and Depression DETAILS? the agenda for a person with CF. Now we 6 If not, please let us know so 10 celebrate these issues as we embrace the SERVICES & EVENTS we can keep you informed. new phenomenon. Never have we had more hope for the future than we have 14 > CF and Body Image DISCLAIMER today. With the advent of new drugs and treatments we can confidently expect this This magazine is edited 17 > Sibling and Offspring Camp and produced for Cystic trend to continue into the future. Nigel Barker, CEO Fibrosis Western Australia. However in addition to the opportunities ANXIETY AND 18 > Interview with Articles or advertisements that the ageing population presents comes benefit, not only to people with CF, but to Michael Cahill in this publication do not DEPRESSION a whole new set of challenges. CF-related the wide population who are increasingly necessarily reflect the views diabetes and mental health issues are having to deal with antibiotic-resistant > Interview with of the editor or those of 20 becoming more commonplace and we infections. Elliot and Ian Anderson Cystic Fibrosis WA. 12 see a rise in demand for these services. 22 > Interview with The theme of this issue of RED magazine Fundraising for services and research Guy and Lisa Daniel DESIGN BY remains a vitally important part of our Function Creative is focussed around mental health. It was activities. You can share in our success by 23 > Mental Health W. functioncreative.com.au not so long ago that people with mental health issues faced a significant stigma getting involved as an individual or a group Support Services P. 08 6363 5820 as we continue to stride towards our goal and prejudice in society. This was based CF AND largely on ignorance. Whilst this ignorance of Lives Unaffected by CF. 24 > RED Resources PRINTED BY still exists today, it is far less common than BODY IMAGE In this last edition for 2015, may I take this Picasso Print it used to be and mental health is rightly 26 > Supporter Spotlight - opportunity to thank each and every one W. picassoprint.com.au seen as a mainstream health issue to be Tim Cash of you that have supported us in 2015. P. 08 9443 9911 proactively managed. 14 > Cross Country Ride Together, we have had a truly wonderful 28 On the research front, we have exciting year and I am confident that together we for a Cure will build upon that success in 2016. CONTACT DETAILS news about how one of our researchers 29 > 2016 Parents’ Retreat Cystic Fibrosis is working to combat persistent infections > Farewell Denise Cork Western Australia Thank you. using nitric oxide and some amazing PO Box 959 insights into how bacteria are working Nedlands WA 6909 together to defend themselves. This FUNDRAISING NEWS 08 9346 7333 research has the potential to offer real [email protected] FUNDRAISING 30 > Fundraising News www.cysticfibrosis.org.au/wa/ NEWS > US Generosity Extends 33 Helping Hand to CFWA Subscribe to our e-newsletter online 30 CF CORNER www.cysticfibrosis.org.au/wa RED NEXT EDITION 34 > CF Diary If you would like to contribute to the ON THE COVER > Spanish Omelette Ben and Taj Daniel next edition of RED please email > Questions About Living [email protected] for LIKE US! STAY INFORMED! 35 with CF more information. WWW.FACEBOOK.COM/ WWW.TWITTER.COM/ CYSTICFIBROSISWA CYSTICFIBROSISWA 2 REDEDITIONFOUR 2015 3 HEALTH & RESEARCH Conference Lay CFA Update Program Now on Video Exciting Times in Cystic Fibrosis Research www.cysticfibrosis.org.au/conference In August this year, the Trustees for the Australian Cystic Fibrosis Research Following another informative lay program at the 11th Australasian Cystic Fibrosis Trust (ACFRT) signed a contract with the University of Wollongong (UOW) Conference, those who were unable to attend can view proceedings online. The for a research project called ‘Multi-action antibiotics to treat chronic variety of information and topics was broad and video published to date covers a biofilm infections’. wealth of subject matter. The project has been peer reviewed to ‘World’s Best Practice’ by the ■ Reproductive health and wellbeing National Health and Medical Research Council’s review process - Sue Towns and the ACFRT has committed to fund the project to $588,687 over Perspective, the development of three years. ■ CF care in Australia, where are we Biofilms often build up in the lungs of people with CF and these going? - Claire Wainwright biofilms contain large populations of bacterial cells and are ■ Participate! Using your skills, encapsulated within gum-like materials. knowledge and experience to improve your childs health Biofilms protect bacteria against the action of antibiotics and against - Susan Biggar the action of cells in the patient’s immune system. Antibiotic resistance can be increased up to 1000-fold in biofilms. ■ Medicines for children with CF - Courtney Munro The Chief Investigator for the Project is Dr Michael Kelso from UOW and ■ Maximising nutritional outcomes he and his research team were the first to discover that low concentrations of facts and fiction - Francis Hollander Nettie Burke, nitric oxide (NO) act as a signal that triggers bacteria in biofilms to disperse so ■ Sexual health in adolescents with CF CEO CFA that the bacteria become much more sensitive to antibiotics and the body’s - Jude Morton and Katherine Frayman immune system. ■ CF screening for everyone When the researchers combined the use of NO-releasing compounds with understanding population based CF antibiotics, they developed a new way of targeted delivery of NO to biofilms. carrier screening and CF carrier testing for relatives - John Massie The aim of this research project is to formulate and evaluate a new generation of compounds with higher potency antibiotic activity that retain their ability ■ What will the future bring us? How to release NO when they encounter biofilms. Those compounds that appear can we plan? - Peter Wark most promising will undergo comprehensive safety testing prior to efficacy ■ Travel - removing the barriers to live life free - panel discussion testing in animal models. ■ Understanding bugs, infections in CF - Pardeep Singh Cystic Fibrosis Australia is extremely excited about this research project and ■ Growing up in a CF world, transitioning with success - Jude Morton will provide updates on Dr Kelso work over the next three years. Additional presentations and papers will be published on the same website as permissions are acquired so be sure to check back in the coming months. 4 HEALTH & RESEARCH REDEDITIONFOUR 2015 5 HEALTH & RESEARCH Psychosocial Aspects of Lung Psychosocial Domains and Factors Measured by the SIPAT: (A) PATIENT’S READINESS LEVEL AND Transplantation in the Cystic (D) LIFESTYLE AND EFFECT OF SUBSTANCE USE ILLNESS MANAGEMENT Item 14: Alcohol use, abuse, and Item 1: Knowledge and understanding of dependence medical illness process (that caused Fibrosis (CF) Population specific organ failure) Item 15: Alcohol abuse - risk for reoccurrence Item 2: Knowledge and understanding of Notes from the 2015 Australasian CF Conference presentation by the process of transplantation Item 16: Illicit substance, abuse and dependence Jane Harris (Social Worker) and Carla Patist (Psychiatric Registrar) Item 3: Willingness/desire for treatment from the Lung Transplant Service, Alfred Health, Melbourne. (transplant) Item 17: Illicit substance abuse - risk for reoccurrence Item 4: History of treatment adherence/ Lung Transplantation History: Goals of a Psychosocial Pre-Transplant compliance (pertinent to medical issues) Item 18: Nicotine use, abuse, and dependence ■ Lung transplantation began at The Alfred Evaluation: Item 5: Lifestyle factors (including diet, Hospital in 1983 ■ Promoting fairness and equal access to care exercise, fluid restrictions, and habits Since then 1,200 lung transplants have been according to organ system) Long-Term Issues Post-Lung Transplant: ■ ■ Maximising optimal outcomes and wisely use performed in total scarce resources ■ Psychological issues: In 2014, 84 lungs transplantations were ■ ■ Ensuring that the potential for benefits (B) SOCIAL SUPPORT SYSTEM LEVEL - Adjustment, body image, eating disorders performed outweigh surgical risks to the patient OF READINESS - Mood disorders ■ The Alfred Hospital performed the world’s by identifying potential risk factors (i.e. Item 6: Availability of social support - Post-traumatic stress disorder first Bilateral Lung Volume Reduction Surgery substance abuse, compliance issues, serious system - Survival guilt (BLVRS) psychopathology) that may result in increased risk of postoperative complications leading to Item 7: Functionality of social support
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