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 ■■ Sexuality/fertility ■■ The average waiting time for a lung transplant transplant failure. system ■■ Work at The Alfred is 90 days - Some wait longer, e.g. small women ■■ Providing information to develop treatment Item 8: Appropriateness of physical living ■■ Non-compliance 25-30% planning for individuals at high risk: space and environment ■■ Rejection *Referrals are encouraged earlier rather - Identifying patient’s level of neuropsychiatric ■■ Re-transplant and cognitive functioning (C) PSYCHOLOGICAL STABILITY AND than later. Initial referral assessment for ■■ Transplant-palliation PSYCHOPATHOLOGY lung transplant is usually performed as an - Developing a psychiatric treatment plan to inpatient and takes approximately 3 days at address current psychiatric problems and Item 9: Presence of psychopathology help minimise preventable problems (other than personality disorders and The Alfred Hospital. organic psychopathology) - Implementing appropriate treatments that REFERENCES: reduce harm and mitigate risk Item 10: History of organic Considerations for Transplant Eligibility: psychopathology or neurocognitive è Maldonado, J., impairment (i.e. illness or medication- Dubois, H., David, E., ■■ Concurrent adherence to treatment regime Psychosocial Assessment: induced psychopathology, anxiety, panic Sher, Y., lolak, S., Dyal, ■■ Ability to co-operate with the treatment team ■■ History attacks) J., & Witten, D, (2012).

■■ Good Support system ■■ Stanford Integrated Psychosocial The Stanford Integrated Assessment Tool (SIPAT) Item 11: Influence of personality traits vs. ■■ Substance use or dependence, e.g. disorder Psychosocial Assessment alcohol, tobacco, marijuana, etc. If this is an ■■ Family for Transplantation (SIPAT): a issue 6 months abstinence is required. Item 12: Effect of truthfulness vs. ■■ Social circumstance new tool for the psychosocial deceptive behaviour evaluation of pre-transplant ■■ Coping skills candidates, Psychosomatics, ■ Psychiatric illness Item 13: Overall risk for psychopathology ■ 53:2, 123-132.

6 HEALTH & RESEARCH REDEDITIONFOUR 2015 7 HEALTH & RESEARCH Using Your Skills, Knowledge and Experience to Improve Your PhD Top Up Scholarship Child’s Health (or Your Own) Supporting mental health and quality of life for infants and 2015 Australasian Cystic Fibrosis (CF) Conference presentation by Susan children with cystic fibrosis (CF) and their families. Biggar, parent of two CF adults and author of "The Upside of Down, A Memoir."

Early Surveillance for CF Clinicians and researchers have a duty to The quality of healthcare that children with CF receive really does matter. As REFERENCES: Lung Disease provide the best care we can to our patients, reported by Atul Gawande, a US based surgeon, in his article "The Bell Curve", and we feel that supporting parents is one the average life expectancy differs in CF clinics across the US. Different clinics We wanted to know what parents è Biggar, S. (2015). Australasian way we can do this. Therefore, we will provide different quality healthcare and have different health outcomes for Cystic Fibrosis Conference experience and how they cope with endeavour to reduce parent mental health people with CF. proceedings - Participate! Using their child’s early surveillance medical issues as part of our support program. Being an active participant in your child’s healthcare can improve the health your skills, knowledge and procedures. The medical procedures experience to improve your child’s are conducted annually and include New Project – Supporting Young outcomes for your child. health (or your own), Sydney August a bronchoscopy, a low-dose chest People with CF at School The key findings of the US CF Foundation Clinical Practice Benchmarking Project 16, 2015 CT scan under general anaesthetic, Medical and treatment advancements have was that the centres with the best clinical outcomes had the following features: and infant lung-function testing under è Boyle, M., Sabadosa, K., sedation for babies under two years of meant that people born with CF in the past 20 Quinton, H., Marshall, BC & years are expected to live well into their 40s 1. Systems ■■ Learn - what do I age. need to know to do Schechter, M. (2014). Ten years of and 50s. Therefore, academic achievement is ■■ Strong leadership improvement innovation in cystic Parents expressed significant anxiety my job of caring important for their long-term outcome. Negative ■■ Dedicated multidisciplinary team fibrosis care: key findings of the US about their child’s medical procedures for my child better school experiences of young people with CF ■■ Easy accessibility by patients and families Cystic Fibrosis Foundation's clinical and about receiving the test results. and how am I most can affect their developmental outcomes. ■■ Close tracking of clinical details and outcomes practice benchmarking project, Parents were concerned about what Such experiences can increase social isolation, likely to learn this? British Medical Journal, 23: i15-i22. the test results would show and what diminish academic achievement and peer 2. Attitudes Let knowledge be a com/2015/03/12/the-cellular- they mean for their child’s short-term relationships, and increase risk of mental health friend not a foe mechanism-of-cf-the-basics/ Cindy Branch-Smith ■■ High expectations for pulmonary and nutritional status and long-term health. Parents also said problems. ■■ Ask, ask, ask of the Telethon Kids they sometimes felt self-judgement because ■■ Low threshold for vigorous treatment of health declines Institute. they perceived any progression of lung disease Thus far, efforts to support young people with ■■ Aggressive use of antibiotics for pulmonary symptoms ■■ Be vigilant – we as a failure on their part as the primary parent/ CF in the school environment have been limited. ■■ Team consensus on standard approach to care should never tolerate a deterioration of lung health This research study will use online techniques to carer for their child. ■ Remember, guilt doesn’t help us but opportunity does engage young people with CF and their families 3. Practices ■ Even though parents understood the variable as co-researchers to develop and pilot a support ■■ Pre-clinic review of patients and treatment planning nature of CF progression, they couldn’t help but program. An online survey of psychosocial ■■ More frequent clinic visits for identified health concerns Participate together on system wide issues: feel responsible. Therefore, we need to provide and school experiences with young people ■■ Regular patient visits with full multidisciplinary team support to parents in understanding that early and their families will guide online discussion ■■ Link up with others surveillance results may make them feel this forums that aim to facilitate development of 4. Patient/family engagement and empowerment ■■ Think broadly way, and that it is a normal reaction. an online intervention. This means that young ■■ Patients provided with data on their clinical ■■ Focus on what you know people with CF will engage with researchers to outcomes Parent Mental Health in the First Six ■ Pick your issues carefully, e.g. is the issue winnable develop the intervention. This modern approach ■■ Patients/families educated on high outcome ■ Years of a Child’s Life to intervention development aims to improve expectations and need for early, aggressive and will it result in improving the outcome for my child’s health? We wanted to characterise our population of social, mental and emotional health needs and intervention for declines school engagement and achievement outcomes parents whose children undergo early surveillance ■■ Patients/families encouraged to provide feedback Action plan for parents: so that we have a comprehensive picture of what of young people with CF. on their clinical care experiences and concerns ■■ What are the issues that matter most to me? it looks like to have an infant or young child with We will soon be contacting young people aged CF in Western Australia. Families appear to cope 10-16 years and their families to see if you 5. Projects ■■ What are two realistic things I could do to try and improve them? well, however, we know that parents can struggle would like to take part in this new and exciting ■■ Self-assess programme outcomes and practice to accept and adapt to their child’s diagnosis, and research project. We also want to include patterns ■■ Who could help me do this? to make the rigorous treatment regime a routine parents and young people in the direction of the ■ Develop projects to improve programme within the family lifestyle. We looked at a lot of study which involves meeting with the research ■ performance of key clinical practices family characteristics to understand what family team and discussing ideas about the research. Improving the quality of care your child life is like. How to participate (as a parent): receives is possible by being an active Some concerning results came up about parent If you are interested in joining our ■■ Believe in yourself participant in their healthcare. Change is depression, anxiety and stress. We also looked stakeholder committee as a consumer possible with persistence and dedication. more closely at parenting stress, and we found representative, please contact Cindy that parents who have a child with CF are twice Branch-Smith on 08 9489 7822. as likely to experience parenting stress than the normal population.

8 HEALTH & RESEARCH REDEDITIONFOUR 2015 9 they can talk in order to co-ordinate their functions,” Microbiologists have long been aware of the so-called HEALTH & RESEARCH says Whitchurch. That mechanism, dubbed “quorum horizontal gene transfer. The new understanding of sensing”, is also key to the formation of biofilms. biofilms explains why this is so prevalent. When microbes hit a tooth or an artificial hip they attach within minutes. They send signals to recruit Biofilms also foil the immune system. And not only by others, and once they sense a quorum, work to build means of their impenetrable slime. In 2007, Høiby's a matrix. Within hours it encases them like a slimy team observed a contingent of immune cells zero in tortoise shell which can account for 90% of the mass on bacteria – then they saw an ambush. Poking out of the biofilm. Quorum sensing also cues the bacteria of the biofilm was a war machine built of sugars and to release toxins en masse – solo actors would do far lipids. Called a “rhamnolipid canon” it blasted holes in Microbial Monsters less damage. the immune cells, a strategy coordinated by quorum From an original article by Bronwen Morgan sensing. Studying biofilms that form at the interface between The Australian Cystic Fibrosis Research Trust (ACFRT) managed by CF agar and plastic using time-lapse photography, Unable to clear nasty biofilm infections, immune Whitchurch has observed these films march forward cells congregate on the outskirts and continue to Australia, is currently looking at how nitric oxide might be used effectively like a phalanx. But the microbes also act like organisms mount their blunted attack. The toxins, like free to break down biofilms so that antibiotics can be more effective in treating far higher up the evolutionary tree. Like sponges they radicals, fired at the biofilm end up damaging the work together to build complex structures. Within surrounding healthy tissue. So, explains Høiby, infections. Whilst a paper on this research will appear in a future edition of days, small microbial villages may become cities that biofilm infections in cystic fibrosis patients end up RED magazine, the following article explains a little more about biofilms and are millimetres thick and replete with tower blocks and destroying lung tissue; in artificial knee joints they why have they garnered so much interest recently. water-filled channels to supply nutrients and remove eat away at the bone. And biofilm infections in the waste. Individual bacteria can take on specialised stomach, colon, liver and prostate are associated roles be it to produce building blocks for the shield or with the development of cancer. Who can forget Superman? Christopher Reeve met Danish physician and cystic fibrosis specialist maintain surface attachment. “They talk, they build; embodied the superhero – in films and in Niels Høiby, who had also been studying the they’re civil engineers. It’s an amazing time to be a Yet biofilms aren’t all bad. Most of our resident bacteria, life. When he fell from his horse in 1995 while clumps of slimy bacteria from the sputum of his microbiologist,”says Whitchurch. When the biofilm our microbiome, resides in biofilms – they are essential training for an equestrian event, Reeve was left cystic fibrosis patients. “I’d never seen anything becomes overpopulated or nutrients become scarce, to our health. Problems occur when a particular biofilm quadriplegic but undefeated. Ultimately, this super like it,” he recalls. “The clumps resembled frogs’ they also release multiple explorer microbes that are ecosystem becomes imbalanced. man was beaten by a microbial infection and eggs.” He proposed the slime might be the reason carried away by the current. Reeve passed away on October 10, 2004. immune cells could not clear the infections. Meanwhile, the war against bad biofilms needs to be Whitchurch also stumbled upon another revelation won. Researchers have been like espionage agents, It was probably not a superbug that brought Høiby and Costerton formed an alliance to raise about biofilms in 2002. The slime that encases the stealing biofilms’ battle plans and cracking their down Superman. More likely it was a microbial medical awareness of this microbial phenomenon. film is a complex goo. Costerton referred to it as the communication codes. And Randy Wolcott’s patients monster of a different kind. A biofilm bears little Costerton was a great communicator and played glyocalyx, reflecting the understanding that it was have been benefitting. resemblance to the individual rods or sphere- the lead role. When Costerton he passed away in primarily made of sugars. Now it’s been dubbed the shaped cocci traditionally studied in biology class. 2012 he was known as the “father of biofilms”. Extracellular Polymeric Substance or EPS to connote The more recent gels include hamamelitannin, an It’s much more like a living animal composed that it’s more of a dog’s breakfast – not only a variety extract of witch-hazel bark that inhibits quorum of multiple cell types – bacteria, archaea, fungi, Cynthia Whitchurch based at the Ithree Institute at of long sugary molecules but also bits of proteins, sensing. Other biofilm-specific treatments that yeasts – communicating and working together. the University of Technology, Sydney, is pursuing lipids and even snippets of DNA. This “extracellular” block the communication codes are waiting in the That makes biofilms almost bullet-proof when it the interest that captivated her since doing her DNA (eDNA) was thought to be refuse, threads of wings. While the biofilm is a mixture of different comes to antibiotics. They cooperate to create a PhD. How do bacteria move en masse across a DNA extruded as dying cells burst. But the vast species, it is no Tower of Babel. A chemical called near invincible slime shield. surface? quantity made Whitchurch question that, so she cyclic-di-GMP is a universal signal for bacteria to added an enzyme that dissolves DNA to the biofilm. aggregate. Last year, Høiby’s group showed they The Canadian microbiologist William Costerton How do the individuals coordinate their To her amazement, the biofilms shrank. The simple could disperse a Pseudomonas aeruginosa biofilm an avid mountaineer, hoped to combine his behaviours? One insight came in the 1990s experiment ended up as a ground-breaking publication growing on silicone implants in mice by decreasing passions to study the microbes of mountain with the discovery of how Vibrio fishceri, a in the journal Science. It turns out the structural the levels of cyclic-di-GMP. Very low concentrations streams. What he found surprised him. The fast luminescent bacteria that lights up the underside properties of the double helix are exploited by biofilms, of the gas nitric oxide also act as a dispersal signal flowing waters were almost sterile, yet the rock of the Hawaiian bobtail squid, coordinates its especially to reinforce their slime shield. A DNA- for many bacterial species. that caused his undoing was colonised with behaviour. Balmy Hawaiian nights may be brightly dissolving drug (Pulmozyme) has been used in cystic slime-forming bacteria. lit by moon or star light so the squid needs fibrosis patients to help disrupt the biofilm. The hope is that biofilm-based tactics will disseminate counter-illumination if it is to stealthily hunt the fast. Not only could hundreds of thousands of lives be Though biofilms were well known from marine creatures swimming below. But the low densities The DNA reinforced slime barrier is only part of the saved, but we might stop our headlong descent into environments these ones got Costerton thinking. of Vibrio found in the ocean do not glow. Much explanation for how biofilms can be up to 10,000 the “end of antibiotics era”. As Wolcott put it “the ‘one If bacteria could gain such a tenacious foothold in as a committee will not vote until it reaches a times more resistant to antibiotics than bacteria in the and done’ strategy of treating infections as if they are a fast-flowing mountain stream, how might they quorum, Vibrio first needs to reach a density of planktonic form. For one thing, most antibiotics throw planktonic is not and cannot work for biofilm”. But he behave in the human bloodstream? 10 billion cells per millilitre of water before it casts a spanner in the works of dividing or metabolising adds “the good news is we can accumulate new a light. Their breeding ground is a cavity on the cells but it turns out mature biofilms harbour dormant knowledge faster than the bacteria evolve”. For ever microbiologists had pictured bacteria underside of the squid called the light organ. (It spore-like cells in their interior. So any antibiotics that as floaters, existing in a “planktonic form”. But also has shades in case the night is cloudy.) Each do penetrate the biofilm will not be able to eradicate evening the bacteria reach the necessary quorum thinking about the slimy films, Costerton began the so-called “persisters”. Administering low levels of This article is based on an article written to ask if these types of microbial colonies could and begin to luminesce. Each morning the squid antibiotics can also backfire. The survivors activate explain some of the more persistent infections of turns downs the wattage by venting the Vibrio, stress-response genes that see them building bigger by Bronwen Morgan that first appeared the human body. He thought of the lungs of his perhaps to save nutrients. It’s an extraordinary and more robust biofilms. The members of a biofilm in Cosmos Magazine in June 2015 son who suffered from cystic fibrosis – they also story but what intrigued the microbiologists was are also immersed in each other’s DNA, allowing for www.cosmosmagazine.com reproduced appeared to be covered in a slimy bacterial layer. how did free-living bacteria, supposedly oblivious a never-ending swap meet – a challenge when some by kind permission of Cosmos Magazine. In 1977, Costerton attended a meeting on lung to each other, sense each other’s presence? “To of the participants carry antibiotic-resistant genes. infections in cystic fibrosis in Montréal. There he me the most fascinating understanding is that

Images courtesy of Chris Hughes / DMAX / Cosmos Magazine

10 HEALTH & RESEARCH REDEDITIONFOUR 2015 11 ■ Increased hospitalisations and healthcare costs. to spiral downwards. That’s where I find it’s really SERVICES & EVENTS ■ ■■ Inability to stay on track with treatment regimens important to fall back on discipline around treatments and consequently worse health outcomes. Research and exercise. Discipline trumps motivation every time. indicates a direct correlation between good mental Motivation waxes and wanes, you can’t depend on it!”. health and adherence to treatment. “For me, recognising when I’m becoming unwell, and WHAT HELPS? going into hospital early works really well. I improve quicker and my mood stays higher. The sooner I get There are obvious things that help with chronic stress into accepting that I’m unwell, having a little cry and Anxiety and Depression such as daily exercise, good diet, adequate sleep, then pushing on and admitting myself to Charlies, the relaxation and fun activities, but sometimes it’s difficult quicker that I can get back to the sweeter aspects of to find the motivation to even do these things. my life”. A large study of 6000 patients and 4500 caregivers from nine different countries (M, Boyle & A, Quittner, 2013) indicated You’re not alone. Everyone struggles at times to stay motivated and positive. Acknowledge that there will MINDFULNESS-BASED STRESS REDUCTION that the occurrence of anxiety and depression was 25% higher be difficult times and developing good strategies to This program has been recommended by a number in adolescents with cystic fibrosis (CF) than the average manage is important. of people with CF and others who suffer from population and 35% higher amongst care givers. “You have to think that everybody with CF will, at some chronic pain, addiction, anxiety and depression. This time, feel anxious and/or depressed”. (Female, 32) program was originally developed by Dr Kabat-Zinn This rates as the third highest co- Other Triggers: utilising a combination of meditation techniques and morbidity amongst people with cognitive-based therapy. This includes: mindfulness For people with CF and their care givers TIPS ON BALANCING CF AND MENTAL HEALTH REFERENCES: CF. Anxiety and depression can be meditation, body awareness and yoga to help the following triggers can also contribute to (Reprint interview excerpt: Holly Ralph, adult with CF): people become more mindful, staying in the present episodic, lasting for short periods and stress, sometimes leading to ongoing issues è Boyle, M & Quittner, A. “Primarily it’s important to remind myself frequently that moment. People are also coached to respond better associated with specific triggers e.g. of depression and anxiety: 2013. Defining depression a specific medical procedure, which I am not my disease. It is a facet of my life but that I am to reactive thoughts and not get caught up in a and anxiety in cystic fibrosis, much MUCH more than that. I try to maintain balance is a normal stress reaction, however Health changes and/or deterioration negative spiral of thinking. Medscape Education for some these feelings continue by realising that I can do (nearly) all things but that I Pulmonary Medicine. ■■ New diagnosis e.g. CF related diabetes can’t do all things at once. For example, I may spend a There are currently lots of published papers on the affecting our ability to enjoy life, (CFRD), continence issues, low lung function (http://www.cff.org/ manage relationships and health. few months where I socialise more, but then the next benefits of mindfulness and programs are now offered ■■ Difficulty maintaining normal activities such few months I’ll socialise less and pick up more work. in hospitals and community centres internationally. UploadedFiles/research/ as work and relationships ClinicalResearch/ What’s not negotiable? Treatments and sleep! As soon With focused practice it is seen that the structure of WHAT TRIGGERS ANXIETY? ■ Poor body image PatientRegistryReport/2012- ■ as I start scrimping on sleep my health starts to decline”. the brain can actually change. The areas of the brain New CF diagnosis: CFF-Patient-Registry.pdf) ■■ Lung transplant and/or fear of death associated with empathy, emotions and compassion Although prognosis is now very “If I have a decline in my physical health it also affects grow, while areas involved in anxiety and stress shrink. Hospitalisation positive for people born with CF my mental health, and I feel sad, flat and unmotivated. Therefore, it is believed this practice can help to foster today, for most parents receiving ■■ Needle phobia and fear of invasive surgery It’s harder to exercise and do treatments, because I’m emotional balance and self-compassion for ourselves news that your baby has CF is a traumatic ■■ Bad news, e.g. new bug, lowered lung function tired and feel ‘crappy’, so my health can rapidly begin in times of stress. event. The trauma of diagnosis generally ■■ Haemoptysis or pneumothorax in past six months becomes bearable with increased confidence to manage treatment, however, for many, OUTCOMES OF UNTREATED ANXIETY If you are struggling with anxiety and/or depression there are numerous supports as listed in the RED what is experienced is chronic sorrow. This AND/OR DEPRESSION: resources section, however, you can also ask to speak with the social worker from your respiratory team or contact Kathryn at CFWA [email protected] or on 08 9346 7333. is a normal grief response experienced by ■■ Poor adherence to treatments both men and women with a chronic illness (approximately less than 50% for adolescents and their care givers. It is associated with and young adults). an ongoing living loss that is permanent, ■■ Reduction in parent’s ability to routinely HERE ARE SOME RESOURCES YOU MAY FIND USEFUL: progressive, recurring and cyclic in nature. administer medication and other treatment to It is different to normal grief as there is their children. Mindfulness Based TEDx Talks® Smiling Mind® Sick and Happy® often no resolution and stages of grief can ■■ Reduction in children’s ability to cope. Cognitive Therapy® www.tedxtalks.ted. www.smilingmind. www.sickandhappy. continue, particularly at times of stress, e.g. Research shows a direct correlation between www.mbct.com/ com/video/Learning- com.au/my-smiling- com/category/ hospitalisation. parental anxiety and depression and children's ability to cope. about/how-will- to-die-%7C-Carly- mind/ wellness/ “Any dream of a happy “white picket fence” ■■ Inability to understand treatment regime. mindfulness-practice- Jay-Met existence is definitely gone. At some level ■■ Decreased quality of life: help-me/ Features a worthwhile Has FREE web and This is another good you’re mourning the loss of a typically - poor relationships link from Carly-Jay, app based guided website with great - lower self-esteem There are also a developing child all the time. You get up every meditations for all age articles on developing - poor body image number of workbooks, an adult with CF from day not knowing what will happen” (Parent) - lack of engagement in the workforce guided meditations Queensland talking about groups. emotional resilience. - low motivation and community-based how she has managed - risky behaviour/s extreme stress. programs available.

12 SERVICES & EVENTS REDEDITIONFOUR 2015 13 SERVICES & EVENTS Many people with CF have normal, positive eating habits and maintain a good BMI, however, given the ongoing emphasis to eat extra calories despite Ab Bloating Quick Tips: at times feeling fatigued, nauseous or just not hungry, it’s not surprising that some people develop c Diet – regular meals, snacks and fluids throughout abnormal eating behaviours. This includes things the day can reduce bloating and constipation. Avoid like over-exercising, or skipping enzymes. eating too quickly and swallowing lots of air CF and Body Image c Exercise – will help redistribute weight and improve Abdominal Bloating: muscle tone This is very common for many people, including c Don’t lose weight (unless recommended by dietitian A recent Paediatric Pulmonary Journal by Simon et al (2011) those in the non CF community. It does affect how or doctor) as it may make things worse indicated that more than a quarter of CF adolescents were people feel about their body image.

“I only wear certain clothes due to my bloated dissatisfied with their bodies. Patient Tips: stomach and don’t eat as much because I don’t “Make sure your back is straight because it will help want everyone to notice my belly! It stands out Weight: Weight Quick Tips: reduce the bloated look somewhat”. (Male, 23) so much more when you have thin arms and Self-perceptions of body satisfaction can c Develop healthy/dietary goals with your dietitian legs, too.” (Female, 22) “Don’t try and lose weight because if we lose weight we be directly related to nutritional adherence and/or respiratory team; this may be a compromise just end up being skinny with big bellies instead”. and respiratory health. Females are “I often get asked if I’m pregnant and although I between the both of you (Female, 43) particularly at risk with almost 45% of laugh it off, it does hurt.” (Female, 24) girls reporting much lower levels of body c Set small goals that are achievable What causes it? satisfaction than males, due mostly to c Find someone to talk to in the team, or a counsellor, ■■ Constipation, slow gut or diarrhoea the desire to be thin whereas males have if you are having trouble with body weight issues ■■ Stress or anxiety Continence: a preference to be heavier with more ■ Increased gas, swallowing air or a failure to Urinary incontinence is very common amongst muscle. There is also a similar perception c Talk with your dietitian about some healthy ■ expulse air women with CF, with studies indicating as many as amongst adults with CF, however, alternatives if you’re worried about a high fat diet 68% of women having experienced it. Some women ■■ Fluid retention adolescents are at even even have issues in childhood, or pre-puberty. Some c Stay focused on the longer term benefits of weight greater risk of poor dietary ■■ Food intolerance men also report issues, however, it is not as common. gain/loss and the positive health benefits that it could intake due to their ■■ Pre-menstrual Stress incontinence is an involuntary loss of urine due

increased energy have on your life, e.g. increased energy, less to the pelvic floor muscles not coping with increased ■■ Weakness of abdominal muscles and poor posture requirements and respiratory infections, etc. pressure on the abdomen, particularly at times like non-adherence to Specific CF issues: coughing, running, sneezing, laughing, jumping and heavy lifting. medical regimes. ■■ Mismatching enzymes – experiment and/or speak “I didn’t realise there were treatments to help, so Many people with with your dietitian I hadn’t mentioned it until I was asked at clinic.” CF often feel under ■■ Imbalance in weight distribution – lack of muscles (Female, 30) in Brisbane reported growing pressure to eat and on arms and legs can make the belly seem greater concerns around obesity amongst a maintain weight: ■■ Distal Intestinal Obstruction Syndrome (DIOS) “When I have to cough or sneeze it’s really traditionally underweight population of people happens when mucus and food block the bowel, annoying. I deliberately clench or even cross my “Around age 16, with pancreatic insufficiency. This is due to causing pain, bloating and cramping. legs to stop this. It’s really embarrassing, but the I really started to much improved treatment regimens, including other outcome would be worse.” (Female, 25) resent the constant ® new medications such as Kalydeco . The Coughing: pressure to eat and ACFC reported 6% of patients experiencing constant monitoring Many people have periods where they experience a Body Mass Index (BMI) over 30 (clinically chronic cough. In a survey made in the UK, 81% Continence Quick Tips: at hospital visits. obese) with 50% of those being pancreatic reported being embarrassed by chronic cough. I think at that insufficient. c Physio – cough in an upright position and suppress

point some of the “I get tired of the usual ‘you should give up the your cough until you’re ready to clear sputum. Sip People with overweight issues have a pleasure of eating fags’ or ‘you’re not old enough to smoke’ even water and relax your breathing to help suppress cough disappeared.” different set of body issues to deal with: when the person is joking.” (Female, 22) (Female, 31) c The ‘Knack” – contraction of the pelvic floor just

“I have suffered from feeling overweight “Coughing does not stop me getting out because before, and throughout activities that cause coughing As presented at the for a few years now. Although I’m glad it’s more important to live life than spend time 2015 Australasian CF being self-conscious.” (Male, 26) c Diet – constipation causes straining of the pelvic floor I don’t look ‘ill’ I often feel overlooked Conference in Sydney, and potential incontinence. Seek dietary advice if because of this. My lung function is only There are no simple answers other than finding a the Adult CF Centre this is an issue 38% at best and I don’t think people notice routine that helps. Some people find that they are (ACFC) at the Prince more prone to coughing in the morning due to an how hard life can be because I don’t look c Pelvic floor exercises – identify the muscles that Charles Hospital accumulation of mucus throughout the night, so like I’m struggling.” (Female, 17) trying to do airway clearance in the morning and stop urine mid-stream and pull them up toward the short episodes during the day could help with this. diaphragm and hold for three seconds, preferably three times a day (seeking more detailed advice to do this properly is recommended)

14 SERVICES & EVENTS REDEDITIONFOUR 2015 15 REFERENCES: Ports and PEGs: health is in decline and I was needing more courses of IVs. Now I think of how much è Continence Foundation A port is a small device inserted easier IVs are and the scar is a lot less of Australia http://www. under the skin to assist in frequent intrusive and visible than I thought it would continence.org.au/pages/ use of antibiotics, often suggested be.” (Female, 28) get-help.html when someone has small veins or Sibling and Offspring Camp is requiring frequent intravenous (IV) We all scar differently depending on age, race, è Didsbury & Thackray, 2010 medications. Generally discreet, causing a small bump under the genetics, general health, size, depth, location [email protected] skin. and type of injury. The 2015 Sibling and Offspring Camp was held on the 8th and 9th of October and was attended by 20 children with a sibling è Financial Assistance A Percutaneous Endoscopic Salt and Sweating: or parent with cystic fibrosis (CF). http://www.continence. Gastrostomy (PEG) or gastrostomy People with CF have a much higher org.au/pages/financial- tube is inserted into the stomach to concentration of salt in their sweat which can assistance.html assist in gaining weight by providing sometimes form crystals on the skin (more This annual event is overnight feeds. After three months so after exercise or in hot weather). Excess designed to bring together the tube may be changed to a è Free Helpline sweating is not known to be directly related young carers from within 1800 330 066 ‘button’ which looks like a small to CF, however many people report excessive valve and is quite discreet. sweating in addition to salt loss which can the CF community to enjoy è Simon, S., Duncan, C., impact body image. a fun, adventure-filled two Horky, S., Nick, T., Castro, “I had a say in where my port went day camp. The camp is – I got the marker pen out and M & Riekert, K, (2011). Body “I met my husband in a hot nightclub and designed to initiate the chose where it would be placed refused to kiss him for ages because I was so satisfaction, nutritional on my side.” (Male, 24) development of important adherence and quality of life aware that I had been sweating and my lips tasted salty. Luckily it didn’t put him off as we in youth with cystic fibrosis, support networks between “Once I got the PEG the pressure got married four years later.” (Female, 31) both children and Cystic Paediatric Pulmonology, to eat was gone so I could eat 46:1085-1092. what I liked without constantly Excessive sweating can indicate an underlying Fibrosis WA (CFWA) staff, thinking of the fat content. I love medical condition such as infection or as well as allow time for è it!.” (Female, 26) Stonestreet, J., Matson, diabetes, so seek further medical advice. respite and the opportunity A & Herd, K (2015). The to learn about CF and prevalence of obesity at the Scarring: adult cystic fibrosis centre, Salt and Sweating share experiences with Most people with CF get scars, Brisbane. Adult Cystic others from this unique some wear them as badges of Quick Tips: Fibrosis Centre, the Prince honour. However a UK study found group. This year’s camp c Extra deodorant and a change of clothes - Charles Hospital, Brisbane, that 68% of people felt that their was held at Bickley scars affected their body image. have these on hand if exercising Queensland Recreation Camp and c Test clothes – put a couple of drops of water “They don’t included a range of fun activities such as flying fox, canoeing, search and on the hem of a piece of clothing to see if it actually bother rescue, team building, vertical challenge and mountain bike riding. We also did me at all. I’m goes really dark when wet, if so don’t buy it some group activities where the children had the opportunity to ask questions and actually quite Scarring Quick Tips: c Carry wet wipes – useful to carry in your bag talk openly about their thoughts and experiences. proud of my c Moisturising – can speed up the healing process. transplant scar c Anhydrol Forte Deodorant or other No particular type is seen as preferable because it’s The Sibling and Offspring camp is designed for children aged 8 to 16 years and the biggest prescription deodorant blocks the sweat

c Silicone – silicone patches or gel can soften, flatten (and best) glands and eventually turns them off. Used is held during the October school holidays each year. If you have a child who

thing that has on small areas such as under arms, feet and qualifies for the camp and has not received an invite in the past, please contact and smooth scars and relieve itching. Available over happened to hands. Discuss with your doctor the counter or on prescription me.” (Female, Gillian on [email protected] or 08 9346 7333 to be added to the 24) invite list for future events. c Heat – paraffin wax or heat application can be c Deodorant talcum powder –

beneficial in scar reduction, however seek can reduce sweating “I think part professional advice for correct application A big thank you to Commonwealth Bank for making this camp possible. of disliking

c Camouflage – a number of products are available the scar is because it over the counter reminds me why I needed c Plastic surgery – laser therapy and other the port – procedures could be beneficial because my

16 REDEDITIONFOUR 2015 17 MEET THE MEMBERS

during my life. I’ve had no chest infections we just do it and work out the logistics later. or hospitalisations since I’ve been taking I always take my required medications as all my Keeping Mentally and Physically Healthy: ® Kalydeco . I also cough a lot less which makes meds, together with the Kalydeco® , is what keep a big difference to me, too. Surprisingly, the my body going. Missing a dose sets me back results of my lung function in the clinic haven’t and I don't have time for that. I always find time Michael Cahill yet showed a huge improvement, but I feel great. for my nebs and inhalers, usually at night and I can do so much more than I could before. close to bedtime works well for me.

® My health was steady before I took Kalydeco . At 36, Michael Cahill, who lives with cystic fibrosis (CF), has I could do a bit of running and bike riding but RED: We hear you have a big trip planned achieved some amazing milestones and works really hard when I crashed and burned, I really crashed to the US at the end of this year. Tell us alongside his wife, Natalie, to make sure they have the and burned. Whereas since I’ve been taking the about that. Kalydeco®, I have found I can do so much more. best life they can with their daughter, Zoe. We decided in 2014, since my health was In 2014, I started going to the gym more often getting better, that December 2015 would be a and then I decided to take up running. good time for us to go to the US as there is less My goal was to do the HBF run in chance of me having issues while we are there. RED: What do you do to keep mentally May 2015, so before that I did Plus Zoe doesn't have to miss any schooling. We healthy? the Aveley Park Run that our are going to the east coast of the US: Orlando My daughter, Zoe, and my wife, Natalie, German student, Paula, (Disney World and Universal Studios), Texas, keep me going. Having a full time job which got me into as she liked Washington and finish in New York. We are going I’ve always had since I was 16, motivates running too. I also did away for five and a half weeks in total and will fly me. If I want to support my family and have the “Great Strides” 4 to most of the places, except Texas, where we a mortgage I have to keep my job. I’m a km run in November have hired a car and will be staying on a ranch Business Development Manager at Signs 2014 with Zoe. We for a week. Ahead and I’ve been there for a few months. both trained for This trip has taken a lot of planning, working Before that I worked at Signhere Signs as a that each day and saving, and getting my health in a good manager for over ten years. after she finished way so we can go. Natalie has done a lot of the school. Currently If I have a bad day I will call Nat and ask planning. I was able to get insurance for the trip I do Aveley Park ® her to get a picnic basket ready and we through Insure and Go and my health is fully Runs which are will go for a picnic at Whiteman Park. I covered. They are the only insurance company 5 km runs most also allow myself to chill when I need to. If that would cover me. I am aiming to mainly go to Saturdays with it’s the weekend and I should be cleaning the local GP in the US if need to. I will also have Zoe. In the last the house or whatever, but I need to chill, one backpack full of my medication for the plane five months I have that’s what I will do. I watch movies with and some spares in my suitcase just as back- completed 12 park Zoe or we play computer games and just ups. I am going to get extra medication to keep runs, 7 of them wind down and forget about any rough at home, ask my local chemist to have some with Zoe by my times that might be happening. medications on hand and give my prescriptions side. The Park Runs to my dad so that in a worst case scenario, he We also have exchange students come to are a world-wide can post them to me if needed. stay with us as company for Zoe. They stay thing where they give for ten months of the year so I need to be you a bar code and time Planning and preparing for this trip has been a mentally and physically healthy for that, your run. In 2013 before huge motivation for me to keep on track with my ® too, as it’s another child we are responsible I started Kalydeco and treatment and look after my health. for. Last year we had a lovely American girl training for running, I could I think what keeps me healthy, both physically named Molly and this year we have a lovely run about 2 km in 20 minutes, and mentally, is having big goals with Natalie German girl named Paula. whereas now I can run 5 km in 28.55 minutes, which is my personal that we both work together to achieve. Our next Natalie and I have had our down times best. I am now aiming to be able to run thing to focus on when we get back from our trip such as going through IVF. It took us three Michael and daughter, Zoe, 12 km. will be to do some upgrades to our house and years to finally be able to have Zoe. It was at the starting line of the look at getting a new car – the bank loves us! a hard and depressing time but together HBF Run for a Reason But keeping financially stable and wise with our RED: How do you stay on track with your Natalie and I have conquered a lot of ups money keeps us working hard and allows us to treatment, work and family? and downs. We have been together since RED: What do you do to keep physically enjoy our life together.

Nat was 17 and I was 18. We now have our healthy? We have a good routine so we fit everything in, second house together and have made it Since 2014, I’ve been on the trial for the as Natalie works, too, and Zoe does dancing accommodating for when we need to just mixed Kalydeco® combination, Lumacaftor a few times a week plus her other after school RED: THANKS MICHAEL chill out. Natalie has her craft room and I have and Ivocaftor, which has improved my health activities, as well as Paula's after school FOR SHARING YOUR a “man cave” (which Zoe likes to take over) and dramatically. I feel it has had the most impact activities. We are disciplined in getting stuff done that helps us have space when we need it. on me out of all the medications I have taken and if someone in our family needs something STORY WITH US!

18 MEET THE MEMBERS REDEDITIONFOUR 2015 19 MEET THE MEMBERS

Keeping Mentally and Physically Healthy: Elliot and Ian Anderson

We know many families struggle with the diagnosis of cystic fibrosis (CF) and we are interested in sharing strategies and ways that you manage the many challenges along the way. Elli and Ian Anderson have an active toddler who has CF. This is a little insight into how they face the day to day challenges.

RED: What do you do to keep mentally medications are routine parts of our day. In healthy? saying that, I have learnt that it’s important When Oli was born premature and ill our to be flexible. If we are invited out at the world crumbled beneath us, we made the last minute to breakfast we do physio a little decision that whatever happened, however later or if we forget a dose of medication we stressed, tired or grumpy we got, we would catch up. We tailor these things to suit our always stick together. We share the same family, for example: we initially found clinic goal – only wanting the best for Oli. We talk visits and hours of waiting in pharmacy about everything openly and honestly and awful and we began to dread appointments. support each other 100%. This had an impact on our mental health and we knew we had to do something to The trauma surrounding Oli’s birth - CF make visits family friendly. We now drop off diagnosis, surgery and the time in the our prescription and plan to have breakfast Neonatal Intensive Care Unit - was so or lunch in Subiaco a few days later so we difficult to deal with. Without seeking help can collect our medications without the from a psychologist I wouldn’t have been stress. able to cope with my new life as a mum. It’s so important to recognise when you need professional help and to access it without RED: How do you deal with feeling embarrassed or like a failure. unexpected challenges? Support from our extended family has Ian, Oli

been crucial in maintaining balance in our and Elliot RED: What do you do to keep Anderson physically fit? lives. We have a number of people who we can call for help at the drop of a hat. I Oli is a ball of energy! Most of our days are find comfort in the fact I can phone the CF spent in our backyard chasing around our nurses if I have any concerns or questions chooks, kicking the ball, going for walks, about Oli. swimming or going to the park. We often RED: Anything further you wish to add? play hide and seek or chasey through the house. Oli loves helping us bake so we like RED: Tell us how you enjoy family Sure. We are parents of a child with a chronic RED: THANKS ELLIOT AND to try out new healthy recipes. time. illness but we are just like every other young couple trying to battle through life with a IAN FOR SHARING YOUR We love being at home, laughing and toddler! We aren’t defined by the disease. RED: How do you stay on track with playing together. As long as the three of us STORY WITH US! managing treatments, appointments, are together, we are happy! It has taken time to go from constantly thinking work, family etc? of CF to it just being a small part of our lives. Our number one priority is keeping Oli Spending quality time together and not taking healthy. This means that his physio and life too seriously gets us through the tough days.

20 MEET THE MEMBERS REDEDITIONFOUR 2015 21  MEET THE MEMBERS Mental Health Support Services Where to go for support and help Keeping Mentally and Physically Healthy: GP Mental Health Care Plan - Medicare rebates for counselling are available for up to ten individual and ten group allied mental health services per calendar year for Guy and Lisa Daniel people experiencing anxiety and/or depression.

Mental Health Emergency SANE® – Information and helpline for Women’s Domestic Violence Guy and Lisa have shared part of their story about how they Response Line® – Rapid response to people with mental health issues. Helpline® – Free telephone support manage to stay active and positive as they face the challenges of mental health emergencies, including 1800 187 263 and counselling for women advice for carers. experiencing family and domestic life with a child with cystic fibrosis (CF). https://www.sane.org/ 08 9224 8888 violence. 08 9223 1188 RED: What do you do to keep life/family balance. Parenting WA® – Information, support Beyond Blue® – Information on a wide mentally healthy? and referral services to parents, carers, variety of mental health problems for http://www.dcp.wa.gov.au/ We also rely heavily on support from my mum grandparents and families with children sufferers, carers and professionals. crisisandemergency/pages/ Take time out together as a couple whenever and dad for three-monthly clinic and annual domesticviolencehelplines.aspx up to 18 years. 1300 224 636 we can. Whether we go for a coffee or have bronchoscopy/review appointments. 08 6279 1200 https://www.beyondblue.org.au/ ® a date night, we try and ensure we We have found that it is absolutely critical Men’s Domestic Violence Helpline continue to communicate openly – Telephone information, referral and to diarise every appointment and to remain ® Carers WA – Support for carers. Fremantle Multicultural Centre® – counselling service for men to help and regularly. organised. Carers can include parents, spouses Crisis accommodation and settlement them change their violent behaviour As a family, we stay active and siblings of people with CF Free call programs for refugees and migrants. It also towards female partners. and positive and try to have RED: How do you deal with unexpected from anywhere in WA. operates a mental health referral program. lots of fun whenever we challenges? 08 9223 1199 (1800 000 599) 1800 242 636 08 9336 8282 can. We encourage Taj When challenges arise, we rely heavily on http://www.dcp.wa.gov.au/ crisisandemergency/pages/ and Ben to remain active support from Grandma and Pop and again we Sexual Assault Resource Centre Anxiety Advice® - Anxiety Advice is ® domesticviolencehelplines.aspx and participate in varied find being organised in the beginning in varied (SARC) – Free assistance and support a website offering advice to people sports and activities, for aspects can give us a bit of a head start. It to any male or female, aged 13 years with anxiety and or depression and to Rural Link® – Specialist after-hours example, gymnastics, and over, who has experienced their families. Here you will find a wide is important we remain in a position to react telephone service for the rural basketball, Auskick unwanted sexual contact or behaviour. variety of articles relating to depression, quickly if needed. communities of WA. Deals with Counselling also available. anxiety and other clinical disorders. football, hip hop dancing depression, mental health issues, and and swimming. 08 9340 1828 http://www.anxietyadvice.com.au/ suicide. RED: Tell us how you enjoy family time. http://www.kemh.health.wa.gov.au/ 1800 720 101 We try and make the most of the 'good times' as services/sarc/ RED: What do you do to http://www.mentalhealth.wa.gov. you never really know what's around the corner. OTHER SUPPORT SERVICES keep physically healthy? ® au/Homepage.aspx Therefore, when Taj is in a good place, we are Arbor – Free outreach counselling Lifeline® - Telephone crisis support, Guy works in a physically service for those bereaved by suicide suicide intervention and prevention, out and about going to the park, catching up The Samaritans® – Non-religious, or sudden death. mental health support service demanding job which helps with family and friends, being active, playing non-judgemental care line, offering keep him fit. We have also set up a football and going out for lunch. 08 9266 1029 13 11 14 emotional support to the lonely, small home gym which we try to use http://www.lifelinewa.org.au/ despairing and suicidal. as regularly as we can. Child Protection Unit® – Within RED: Anything further you wish to add? Princess Margaret Rose Hospital. Samaritans Care Line – 08 9381 ® Guy, Lisa, Taj and The boys and I walk to school as often as Ensures that children are protected Crisis Care (Family Helpline) – 5555 (metro) Ben Daniel. We always work hard to remain positive and Problems within the family, including possible. We also have a trampoline on which whilst in hospital and on discharge. Samaritans Care Line – 1800 198 are forever hopeful that technology will provide domestic violence, homelessness, child both boys enjoy endless hours of fun. Covers child abuse, injury, neglect and 313 (country) significant improvements in the management of welfare and general arguments. Again, we encourage the participation in a wellbeing. CF in the near future. Thus, providing a much Samaritans Youth Line – healthy balance of sport and activities. 08 9340 8646 08 9223 1111 (metro) or better prognosis for Taj than if he were born 1800 199 008 (country) 08 9388 2500

when we were. The support we get from Princess RED: How do you stay on track with Ngala Family Resource Centre® – http://www.health.wa.gov.au/ http://www.thesamaritans.org.au/ managing treatments, appointments, Margaret Hospital and Cystic Fibrosis WA is Early parenting services, support and work, family, etc? amazing and makes a huge difference to us as guidance for families and young children. Kids Helpline® – Free telephone and Alcohol & Drug Information Service® parents for which obviously we are very grateful. (ADIS) – Information, referral and We work very hard to adhere to a strict regime 08 9368 9368 online counselling service for young people between 5 and 25 years. counselling for substance users and which includes physio before and after school http://www.ngala.com.au/ family members. and a nightly nebuliser. Most medications are 1800 551 800 08 9442 5000 taken at the start of the day which makes it Youth Focus® – Working with young http://www.kidshelp.com.au/ easier to remember. RED: THANKS GUY AND people aged 12-18 years who show http://www.dao.health.wa.gov.au/ signs of depression, self-harm and ® Guy is self-employed which provides Men’s Line - Dedicated service suicide. Also supports families. for men with relationship and family some flexibility in relation to attending LISA FOR SHARING YOUR concerns. appointments and achieving a healthy work/ STORY WITH US! 08 9266 4333 http://youthfocus.com.au/ 1300 789 978

22 MEET THE MEMBERS REDEDITIONFOUR 2015 23 

SERVICES & EVENTS

RED Resources Nutrition Program Coming Soon Due to be launched early 2016, CFWA is currently working on a new set of community resources based on nutrition and food. Masters of Menu 2! CFfood will include a set of four booklets aimed at nutrition in infancy, childhood, adolescence and adulthood. The resources will aim to educate the target audience Submit and Win! about nutrition and the variety of concerns faced during each milestone. The resources Our wonderful friends at Menu Magazine are taking on will be endorsed by the Dietitians Group of Australia. the challenge of producing a second Masters of Menu CFfood will also include a member recipe book and recipe book following the incredible success of the we would love a submission from you. This could be CFfood inaugural edition. a main meal, snack, drink, dessert, etc. It may be a cystic fibrosis nutrition program

high calorie smoothie, a well-balanced dinner full of Name of Recipe:______Due for publication mid 2016, the book will healthy fats, a breakfast that you can eat on the go - Prep time: ______comprise recipes from leading restaurant and café whatever you like! Cooking time: ______chefs around Perth as did the first edition. However, Number of serves: ______We will also scatter useful recipes and tips Ingredients & Measurements: (use tsp, tbsp, gms, cups - Please dot point the ingredients) the second edition will also feature the favourite cystic ______fibrosis recipes of our readers! throughout the rest of the resources, so if you have ______specific ideas for babies, toddlers, school lunches ______Those recipes selected by our panel of experts and other niche groups, please send those to us, ______will have their recipe published and receive too. Method (Step 1:, Step 2:, etc.) $100 in prizes each! ______If you have calculated the calories, fat, protein and/ ______or carbohydrates please include this with the recipe ______Submit your recipe by email to ______(per serve). [email protected] ______

If you have time to also cook the recipe at home, ______please send in some photos to go along with the ______recipe. To ensure best quality, please send in photos ______Nutritional information per serve with a minimum 2MB, taken with a digital camera if Calories: Fat: Protein: possible. If using a smart phone, it needs to be at least Carbohydrate: an iPhone 5 or 4S to ensure the picture quality is high enough. Please send a minimum of 3 photos. ® SPILL Thank you to Newman’s Own Foundation® for making this project possible. A new sexual and reproductive health resource for adolescents The recipe and photos should be emailed to Gillian on [email protected] using the form that can be To demystify and improve communication and downloaded from www.cysticfibrosiswa.org/resources/cffood understanding about sexual and reproductive health for adolescents with cystic fibrosis (CF), a new online tool has been developed by Cystic Fibrosis Victoria and a range of experts in CF, sexual health and digital communications. SPILL® (spill.org.au) has relevant, targeted and age-appropriate information in both text and video formats for teenagers with CF who are just learning about their sexual and reproductive health. It is envisaged this will greatly assist health professionals’ addressing this important aspect of growth, development and well-being with their CF patients. Visit spill.org.au

24 SERVICES & EVENTS REDEDITIONFOUR 2015 25 SUPPORTER SPOTLIGHT Tim Cash – General Manager Exchange Tower

RED chats to Tim Cash about corporate support for charity and the association Exchange Tower has with CFWA.

RED: Welcome to RED, Tim. visiting the building - an in-house in conjunction with Vault Fitness in Can you tell us a little about the gym (Vault Fitness), concierge, support of 65 Roses month fundraising. history of Exchange Tower? ‘state-of-the-art’ end of trip change The tenants got right behind the initiative room and bike facilities, conference and we raised $4,000. In 1992, Exchange Plaza was and theatre facilities, and a range of Exchange Tower also supported The completed and became home to other personalised services. George Jones Cystic Fibrosis Golf Classic the Australian Stock Exchange, which is an incredible event. hence the name. However, in 2015, the building was rebranded RED: Exchange Tower has as Exchange Tower to reflect the become a fantastic supporter RED: When you aren’t busy contemporary vision of the building. of CFWA participating in managing Exchange Tower, what do the Golf Classic with a gold you like to do with your spare time? As one of the few premium office sponsorship and hosting towers in the CBD we are very proud the Vault 65 Roses Spinning I have a large family spread between of the building and what it offers Challenge. Can you tell Perth, Sydney and the UK and I love tenants and visitors. readers about how Exchange ‘round ball’ football – playing, coaching Tower became involved in its and watching. charitable pursuits? RED: Exchange Tower is an I am also an enthusiastic global explorer impressive office building, it and I have an ambitious plan of travelling sets itself apart from many Our vision for Exchange Tower through all 48 mainland states of others in the CBD. includes the building connecting with America in a single trip. I have previously Yes, the highly functional building the community and we specifically accomplished 26 states in one trip but 48 was designed to maximise the views want to connect with and support is the next challenge. of the Swan River. When Elizabeth great charities. Quay is completed, the building will RED: Thanks for your time Philanthropic Fridays is a title that we have world class hotels, restaurants, Tim. We appreciate you’re have given to one of our community shopping and other amenities on it's programs which seeks to support very busy in and out of door step. charitable causes including CFWA work! We have a host of first class and The Starlight Foundation. Most amenities for everyone working or recently we held a “Spin Challenge”

'Most recently we held a “Spin Challenge” in conjunction with Vault Fitness in support of 65 Roses month fundraising. The tenants got right behind the initiative and we raised $4,000.'

26 SERVICES & EVENTS REDEDITIONFOUR 2015 27 SERVICES & EVENTS

Cross Country Ride for a Cure 2016 Parents’ Retreat Save the date for the 2016 Parents’ Retreat! Intrepid adventurer and CF mum, Beth Flatt, is gearing up for an epic coast to coast motorbike ride for a cure. RED To be held at Hillarys Resort Harbour in Hillarys from recently caught up with Beth to chat about her journey and the 11th to 13th March. Keep any eye out for more aspirations ahead of her fundraising challenge. information about the event early next year.

Hello Beth, thanks for your time. Can you tell our readers a little about what For more information contact Gillian on has inspired you to get involved with the trans-continent bike ride? [email protected] or 08 9346 7333. Since getting my motorcycle license earlier in the year and seeing the Ride for a Cure advertised, I knew that this was something I needed to pursue. I’m very passionate about motorcycle riding and obviously also cystic fibrosis research so to be able to combine the two seemed like a perfect combination.

RED: Who are the organisers and how many riders are expected to make the trek? This ride is organised by Theresa Carlson who is the Ambassador for Cystic Fibrosis Australia, the main organisation looking into cure research. Theresa is hoping for about 50 riders to participate. Farewell

RED: Have you been riding motorbikes long and what do you plan on riding coast Denise Cork to coast? My first ever encounter with a motorcycle was earlier in the year after obtaining my learners permit. I decided to go for a lesson and within three weeks I had my license and have ridden It is with great sadness that we say almost every day since! I have recently upgraded my little learner’s bike for a Harley Davidson, goodbye to one of our Home Care Workers. which will take me from Perth to Victoria, and back for the ride.

Denise started with Cystic Fibrosis WA (CFWA) RED: Do you have a fundraising target and how can supporters assist? in May 1993 servicing families in the southern I have organized a CF Charity ride from Byford to Dwellingup on the 10th of October to help suburbs and has recently celebrated her 22nd towards the entrance fee into the Ride for a Cure, which will go to Cystic Fibrosis Australia. anniversary as a Home Care Worker. Denise is Any other funds that I can raise will be going to CFWA. I am currently at over one thousand leaving us to spend more time with her own family. dollars just from donations and hope to get that up another couple of thousand after the Her compassion, generosity and kindness will be October ride. greatly missed by everyone she has met over the years. RED: THANKS FOR TAKING ON THIS INCREDIBLE CHALLENGE AND CHATTING WITH US TODAY BETH. WE LOOK FORWARD Denise would like to say thank you to her CF TO REPORTING ON YOUR ADVENTURES IN A FUTURE EDITION families who have given her so much joy. She is OF RED. truly grateful for everything she has learnt from her families and will cherish the memories.

We wish her much love and all the best for her future journey.

28 SERVICES & EVENTS REDEDITIONFOUR 2015 29 FUNDRAISING NEWS

Kim Metcalf on the 14 km Run with daughter, Elisabeth, (CF) and son, Anthony Fundraising News July, having run very little previously. Thank you for all the hard work, hours given and tireless support Amazingly, Kim committed himself from our exceptional fundraisers! Once again there has been an to the 14 km run. Not only did he amazing show of support for CFWA. complete the 14 km run, but he raised an incredible $2,235.75! The money raised is making a real difference, your ongoing support means a lot to us! Thanks so much! “I went from someone who couldn’t run 2 km ten weeks ago to someone who completed a solid 14 km in just over 90 minutes. Even though We would like to express our gratitude Support Centre collected $16.00 and I was beaten by a guy running in army fatigues to the small businesses and community the team from Classique for Hair and carrying his full backpack, and a girl carrying the Westpac Rescue Helicopter, I was satisfied with groups who have made donations to Beauty raised $17.00. funds for CF! help improve the quality of life of getting to the finish line!” people living with CF! Thank LJ Hooker raised $94.30 from a Thank you to Samson Primary School for collection tin placed on their counter. Many thanks to the team Swan River Runners you to Cambrai Craft Group who raised and amazing $4,294.64 and to the holding a free dress day and raising $312.00 for donating $200. The Eaton Thank you also to the Xpresso Code Kearnan College for raising $258.05; and for bringing in the amount of $123.45 City to Surf runners for raising, $4,523.05! A Coffee Club for your donation brilliant effort from all involved. thanks also to Wyalkatchem District High of $100. Thanks also to Gregs and The Good Guys at Malaga for School for raising $74.75 And here are the individual results – thanks Discount Chemist for your raising $169. so much! donation of $100 and Amcal, Jewel-Mend Jewellers contributed OUR FUNDRAISERS DO IT AGAIN! Inglewood for donating $263.20 through their money tin Kim Metcalf $2,235.75 $100. Thank you for your We are so grateful to every faithful community collection program. Helen Addison $1,118.24 support! fundraiser for making their presence known in Thank you! We are so very grateful for Sarah Houston $769.65 their local communities. Whether it's cooking your ongoing support. Nicole Spirkovski $126.00 sausage sizzles, holding bake sales or selling COLLECTION TINS ADD UP! raffle tickets, thank you for your commitment, Kelly and Abbey Barker $1,653.25 We would also like to say thank your time and your labour of love! you to the community fundraisers, RUNNING FOR CF Karen Cooper $682.50 Thanks to Frances Stone for holding a special businesses, clubs, individuals and We are continually amazed at the Mel Gahan Spreckley $670 community groups for taking the generosity of so many people who champagne event with poetry, art and dancing, Emma Walter $549.75 time to place collection tins. Every help us each and every day in our raising $550.00. Perry Cunningham $415.80 dollar really does make a difference efforts to improve the lives of people Katrina East and the Big W team, pooled their and it can be surprising how these can living with CF. After months of training Annie Tomley $260.00 efforts together and raised a total of $450.00 add up. and preparation and training we had Amber Goward-Bell $213.75 Thanks so much! a faithful team of resilient runners who Thank you to in Bunbury Total Tools took to the streets. Thank you for your Fiona Mazzei $78.00 Proving that age isn’t holding them back, the for raising $27.00; and Bernard Stokes time and effort, hours of training and residents from the Baptist Care Sunshine Park the for raising, New Beaut Coffee Ute running, for the voice you have given to Retirement Home raised $146.50 by holding a $84.75. from FUNDRAISING AT SCHOOL Ron York and the team our cause, for your sweat, calories and crazy hair day! the collected $18.80; Men’s Shed miles. And of course, thank you for the Once again the school communities have been while collected, Harvey Bowling Club money you have raised! making an impact with free dress days, crazy hair Sally Walsh and the team from ANZ raised $47.50. days and gold coin fundraisers. $50.00 by holding a free dress day and Tom The South West Women’s Health Thanks to Kim Metcalf who ran the Leadbeatter, along with the team from NHPW Swan River Run on Sunday 26th Thanks so much to all the teachers, students Wrestling, raised $350.00 at their annual ladies day. and parents for participating in helping to raise

30 FUNDRAISING NEWS REDEDITIONFOUR 2015 31 FUNDRAISING NEWS

A great big thank you also to the team 65 KMs FOR 65 ROSES THANKS ALSO GOES TO… from The Good Guys Malaga for If you like inspirational stories you are We would also like to express our collecting $2,219.19 through an instore sure to love this one. Read inspirational gratitude to the organisations and who token fundraiser. story of seventeen-year old Hunter have made contributions CFWA through Thanks to Anyr Atak for raising Jackson who took on the gruelling their Community Contribution and $144.75 by recycling clothing. challenge of running 65 kilometers for Employee Achievement Programs. 65 Roses – an endurance run for his With this is mind, thank you to Myer A fantastic evening was Westpac held a free dress had at the inaugural sister to raise funds for cystic fibrosis. for your contribution of $10,110.45 Red Tie Dinner Dance. day raising $75.50 while and Woodside Energy for $2,500. We Oliver Harding sold his appreciate your support and can’t thank special brand of delicious THE RED TIE DINNER DANCE you enough! home-made oats raising On Saturday 29th August the very first $926.00. Red Tie Dinner Dance went off with a bang at the Fremantle Sailing Club! Have we omitted your fundraising efforts Holly Edwards-Smith from RED? From time to time, we receive has been busy fundraising With the stunning sunset over the 'unknown' donations without any for CF with her grand total Indian Ocean providing the backdrop information. Please contact our efforts for the year reaching for the inaugural event, the evening fundraising team on 08 9346 7333 to $2,461.91. was kicked off with a champagne make us aware of your contribution. reception followed by a sumptuous And Ciara Taylor and the Red Run three course meal that was prepared For CF final tally reached an incredible by some of Perth’s finest chefs. With Katrina East $10,000! Ciara has a family friend living plenty of mystery prizes, quirky photo and the Big W team with cystic fibrosis so she is extremely opportunities and raffle prizes on offer, passionate about raising funds to the elegant evening was not without a US Generosity support research into finding a cure. unique note of fun. Then to cap it all off, Thanks Ciara and well done! Tod Jonson’s Peace, Love And All That Thank you also to Caitlin Stuff stepped up the pace and created Extends Helping Jones for raising the amount an irresistible draw, making it very of $1,500 by holding difficult to say no to the dance floor. a bikini car wash and Hand to CFWA Tickets for the Red Tie Dinner Dance to Lynda Carson for sold out early and it is expected tickets raising $111.80 through With special thanks to Alcoa and their global network, will sell out quickly again when the community fundraising in Cystic Fibrosis WA is now eligible to receive grant funding from donors in the United States event comes around in 2016. The July. via the Silicon Valley Community Fund (SVCF). grand total raised from the evening was Sue Williams and the $17,083.66. An excellent result for an Appearing on SVCF’s own site as well as its partner site, YourCause, allows matching families from the South inaugural event! gift opportunities from US donors such as Alcoa or Alcoa employees to choose CFWA West area combined their as their charity of choice. In 2014, charities in 56 countries received USD$18million from Thank you to the Fremantle Sailing efforts and teamed up for the SVCF making it the largest community fund in the Unites States with global philanthropic Club and the Fremantle Sailing Club 65 Roses Challenge, raising a participation. Organising Committee for your time, grand total of $1,426.30. Thank commitment and hard work to host the "The US is known for its giving culture and philanthropy; to benefit from that kindness you all! Red Tie Dinner Dance. We can’t wait for halfway around the globe here in Perth is incredible”, said Nigel Barker CEO. “With the the event to come around again next year! Hunter Jackson and his sister, assistance of SVCF and other like organisations, Cystic Fibrosis WA will continue to deliver Ella, after his 65 km run vital services to people living with the condition whilst the search for a cure continues".

32 FUNDRAISING NEWS REDEDITIONFOUR 2015 33 CF CORNER Questions About CF Diary Living With CF

NOVEMBER JANUARY ‘I have noticed when I look in the mirror lately 7 Convicts for a Cause 4 CFWA office reopens 20 CFWA Christmas Party & that my shoulders and back look rounded Awards Evening and I sometimes get pain in my neck and USEFUL RESOURCES: Please note these MARCH dates were correct at 11-13 Parents’ Retreat back which gets me down. Is there anything è www.cysticfibrosis.org.uk/ the time of printing but DECEMBER media/82155/EB_CF_and_ are subject to change 18 CFWA office closes I can do to manage this and stop it from Body_Image_Jan_11.pdf getting worse?’ è http://www.rbht.nhs.uk/ patients/condition/cystic- Changes to posture are quite common in clinic as they can fibrosis/cf-team/posture- in cystic fibrosis (CF) and are very often suggest stretches issues-in-cf/ associated with pain and a decrease in and positions for Spanish Omelette self-confidence. It can also make it harder airway clearance è www.thoracic.org.au/ to do your airway clearance and exercise and nebulisation imagesdb/wysiwyg/ A quick, nutritious meal ideal for breakfast, lunch or dinner which may have a negative impact on to help address physiotherapyforcystic Recipe sourced from CFchef® www.chef4cf.com/recipes/lunch.html your health and the way you feel about any posture and fibrosisinaustralia_1.pdf RECIPES SPONSORED BY yourself. pain issues you Ingredients Method may be having. MENU Ideal posture allows the muscles and 500g potatoes 1. Peel the potatoes and onion MAGAZINE They can also assess the need for extra joints to be in a position that involves interventions such as hands-on therapy 1 onion 2. Cut potatoes into slices the least amount of effort and overload. and other pain management techniques. ½ cup plus 2 tbsp olive oil 3. Chop onion into small pieces Postural changes occur when the 6 eggs 4. Heat the oil in a frying pan muscles and joints adapt to the abnormal Salt and pepper position of your body, placing extra stress 5. Put the onions and potatoes in the frying pan (stirring on them and often leading to pain. In CF, Nutritional Information occasionally without breaking the potatoes) an increase in the forward curvature of Serves: 4 6. Once the potatoes and onions are starting to get brown, the upper spine (thoracic kyphosis) can Calories per serving: 534 beat the eggs and then place them in occur as a result of the posture adopted Fat: 43g 7. When it appears to be about done, put a plate on top of for breathing and coughing. Sodium: 115mg the frying pan and invert it Protein: 13g Being aware of your posture and Calcium: 63mg incorporating stretches into your everyday routine is important to prevent postural changes from occurring. If you are already experiencing changes to your posture and joint or muscle pain, it is not too late to start exercises to address these issues.

Improving your posture can have a positive impact on body image and self- esteem and also improve your pain and lung disease. Talk to your physiotherapist

34 CF CORNER REDEDITIONFOUR 2015 35 2015

BREAK OUT Experience a night of charity, fun and & MAKE A mischief in the historic DIFFERENCE Fremantle Prison.

On Saturday November 7, dozens of people will be put behind bars for an evening of fun, suspense and entertainment. In order to be released, they must raise their bounty!

Convicts for a Cause is an annual cocktail party brought to you by Diabetes Research WA, Cystic Fibrosis WA and the Rotary Clubs of Perth & Mt Lawley.

Now in its seventh year, we are aiming to raise $120,000 which will make a huge difference in the lives of many sick children.

The night will consist of around 500 attendees dressed as their favourite convicts – some are being locked up, and others will just be there to join in the fun!

Hosted by 6PR’s Steve Mills and interactive entertainment provided by the internationally acclaimed Ellandar Productions, the night will be fast paced with some unexpected twists.

Register as a guest or fundraising convict at: www.convictsforacause.org.au Thank you for your support and we look forward to seeing you on the night!

When: Saturday, Nov 7 Where: Fremantle Prison Time: 7-11 pm