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Cystic Fibrosis
General description including types, causes, prevalence, signs and symptoms
What is CF?
Cystic Fibrosis (CF) is the most common inherited life-shortening condition affecting Australians. When someone has CF, his or her cells are missing an essential protein so that chloride and sodium can not be properly transported across the cell membrane. This cellular defect affects the body in many significant ways. In the lungs, mucus secretions are thicker, stickier and hard to move. Blockages in the airways trap bacteria, causing repeated lung infections and localised inflammation that eventually produces scarring and irreversible damage to the lungs. Respiratory failure is the major cause of premature death. CF also directly affects the pancreatic and gastrointestinal systems. Around 90% of people with CF need to consume enzyme capsules when eating. This is because the pancreas is unable to produce sufficient enzymes to digest food. Furthermore, thickened secretions block the pancreatic duct, meaning that naturally occurring enzymes can not reach the small intestine to break down food so that nutrients can be absorbed. CF can also affect the sinuses, liver, spleen and reproductive systems. Around 95% of males with CF are sterile as they either do not have or experience shrinkage of the vas deferens (the tubes which carry sperm from the testes to the ejaculatory ducts). However, the existence of sperm in the testes means that many are able to father children using IVF techniques. Women with CF may also have reduced fertility but in most instances can conceive naturally.
How does CF vary?
Both the severity and symptoms of the condition vary greatly between individuals. Some people experience more problems with their lungs, others with their pancreas and digestive system. Typically, they live with mild, moderate or severe lung disease and gastrointestinal problems. People with mild or moderate CF usually appear healthy but this appearance can be misleading as they must adhere to a rigorous health regimen and see specialist consultants. Life expectancy has improved dramatically for all persons with CF since it was first recognised as a specific condition in the 1930’s and infants with CF rarely lived to be toddlers. Today, with early diagnosis, greater understanding of CF, improvements in treatment and better management, people with CF can live successful, happy and fulfilled lives. The median age of survival (half live longer, half die younger) is now 37 years. Many people who have CF live well into their 30’s, 40’s and 50’s.
How do you get CF?
CF is not contagious. It is an inherited, recessive condition that equally affects both males and females. To be born with CF a child must receive a faulty copy of the ‘CFTR gene’ from both parents. A child that receives a faulty copy from one parent and a normal copy from the other is born a ‘carrier’ and will not have CF. Approximately one in every 25 people in the community is a healthy carrier of the faulty gene, equating to around 1 million carriers in Australia. If both parents are carriers then every pregnancy has a one in four chance of producing a child with CF. Accordingly, around one in every 2,500 babies in Australia is born with CF . Since 1989 the National Newborn Screening program has tested all babies born in Victoria for CF. Approximately 3,000 Australians have CF of which more than 600 live in Victoria.
Treatments, including role of specialists, effects of treatments, use of devices, daily routines
People with Cystic Fibrosis (CF) undertake a daily health regime which increases longevity and maximises quality of life. Each person’s regimen is individual and is informed by and agreed with his or her treating consultants. It may include physiotherapy for airway clearance, exercise, attention to specific dietary requirements, nutritional supplementation and medications.
Airway clearance
Airway clearance techniques are used daily to help remove the thick secretions in the lungs, to decrease infections and improve air exchange. Inhaled medications are often used to open the airways either by an inhaler or nebuliser. Then a mixture of percussion physiotherapy, vibes and breathing exercises are used to dislodge small mucus plugs in the airways. This usually causes coughing, enabling the person to ‘cough up’ the mucus. Alternatively, breathing into a device such as a PEP mask or flutter device exerts pressure to loosen mucus. Airway clearance is commonly undertaken between 1-4 times daily at home, but may sometimes be needed in the school or workplace environment. Exercise further assists airway clearance by loosening mucus and promoting deep breathing.
Medications
Respiratory medications aim to clear thickened secretions, open airways and prevent or control respiratory infections. Medications vary depending on the individual and the severity of his or her CF. Typically they are numerous, time-consuming and vary throughout the year depending on whether the person is experiencing an exacerbation (a worsening of lung condition) or a ‘well’ period. Some common types of medications include:
Bronchodilators – these can induce overactivity, with a fast heartbeat and trembling hands Anti-inflammatory medications Antibiotics Steroids – these can cause mood swings, irritability and an increased appetite These medications may be given orally, intravenously, through metered dose inhalers or in aerosol form using a nebuliser. Intravenous medications may be administered either in hospital or at home.
Enzymes and other supplements
Pancreatic enzyme capsules are supplements and do not pose a risk if accidentally consumed by someone who does not have CF. The capsules contain a combination of several body-friendly enzymes to help digest and absorb nutrients. When these enzymes pass into the stomach they act like the body’s natural enzymes by breaking down the fats, protein and starch contained in food and increasing absorption in the small intestine. Most people with CF must take enzymes when eating foods and may consume as many as 40 capsules each day. Young children with CF who are unable to swallow capsules consume the enzyme beads from opened capsules mixed together with a pureed fruit such as apple. Additional dietary supplements such as vitamins and calcium tablets may also be taken. Daily salt supplements may also need to be taken as people with CF lose a particularly high level of salt through their sweat. This increases their risk of dehydration and electrolyte imbalance. Alternatively, salty foods may be eaten.
Diet
People with CF are encouraged to consume a diet that is high in salt, protein, fats and calories to help provide their high-energy requirement and meet nutritional needs. In general they require an energy intake of between 120% – 150% of the recommended daily allowance (RDA). This may mean consuming large meals and additional snacks throughout the day to maintain proper nutrition. Some people with CF have a gastrostomy tube to help with severe malnutrition. This is a feeding tube that goes directly through the abdominal wall into the stomach. A plastic button sits on the outside of the abdomen. Supplemental liquid nourishment and some medications can be administered through this button. This is rarely undertaken in the school or work environment.
Cystic Fibrosis Victoria
Cystic Fibrosis Community Care
80 Dodds Street
Southbank Victoria 3006
Name & Description of Peer Support Services Offered:
Name & Description of Peer Support Services Offered:
CFCC offers the opportunity for parents and partners of people with CF to meet others in similar situations at regular dinners held throughout the year, across Victoria. CFCC also coordinates a peer support ptogram that provides the opportunity for people affected by CF to meet others who share similar lived experiences. This includes parents, siblings and grandparents as well as individuals living with CF.
CFCC also moderates a Facebook page called Sister5Roses, designed specifically for femailes with CF, aged 18 and over.this page offers a safe online community for members to post questions, have a laugh and talk all things CF-related or otherwise.
Meeting Times & Venues:
For a full list of groups and details visit our website at www.cfcc.org.au
Contact Details for More Information:
Program and Support Services Manager
e: support@cfcc.org.au
p: 03 9686 1811
Link to web page.
http://www.cfcc.org.au
Health Support Plan
Why should a Student have a Health Support Plan?
About 15% of school-aged children and young people experience chronic illness.
Examples of chronic illnesses are Asthma, Cancer, Cystic Fibrosis, Diabetes, Epilepsy and Haemophilia.
A chronic illness is any long-lasting health condition that requires regular, but not necessarily constant, monitoring and treatment. It is often ‘invisible’ without any outward signs of physical limitation or disability.
The illness may affect the student’s diet, learning style and capacity to exercise. It will certainly affect their quality of life and capacity to participate in activities. It may even be life threatening.
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In most cases, how the illness is managed on a day-to-day basis will affect the student’s health and general well-being. The most effective way to support the individual needs of a student with a chronic illness is to work in partnership with them and their family or carer to devise a Student Health Support Plan.
To help all parties involved we have developed a step-by-step guide to preparing a Student Health Support Plan. A Student Health Support Plan outlines how the school will support a student’s health care needs, based on health advice received from the student’s medical/health practitioner.We have also created six very short video clips of students giving practical examples of how their schools helped them to overcome their individual challenges. |
A step-by-step guide to preparing a Student Health Support Plan
View students telling their stories of practical school support
Download this complete section as a PDF
| This resource was made possible by a grant from The Jack Brockhoff Foundation
In preparing this section on Student Health Support Plans, the Chronic Illness Alliance would like to thank and acknowledge the important contribution made by each of the following organisations:
We are particularly grateful to Eliza, James, Jemma, Sarah, Tamara and Vassie for giving us the opportunity to learn from their many experiences at school. |
Further Resources
Organisations, including services and resources available
Helpful Resources
Cystic Fibrosis Community Care
Cystic Fibrosis Community Care was established in 1974 to support parents of children with Cystic Fibrosis. Since that time, the organisation has grown to provide services and support across Victoria for children, adolescents and adults with Cystic Fibrosis and their families and carers. At any one time, there are over 600 Victorian families using our services.
Cystic Fibrosis Community Care can be contacted at:
80 Dodds Street Southbank Vic 3006
Phone: (03) 9686 1811
Toll free: 1800 633 685
Email: admin@cfcc.org.au
Website: https://cfcc.org.au
Cystic Fibrosis Community Care programs and services include:
Support, information and education, advocacy, and fundraising
Recommended reading/viewing:
Websites:
CFCC website: https://cfcc.org.au
Cystic Fibrosis Worldwide: www.cfww.org
CF Foundation USA: www.cff.org
CF UK Trust: https://www.cysticfibrosis.org.uk/
Boomer Esiason Foundation: www.esiason.org
Health direct information on Cystic Fibrosis https://www.healthdirect.gov.au/cystic-fibrosis-cf
School Strategies
Here are some suggestions to help teachers make school a positive environment for students with Cystic Fibrosis (CF).
Building relationships
As each student with CF is affected differently by the condition it is imperative that teachers speak with the student and his or her parents to determine that student’s particular needs. Building relationships with the student and parents will enable a frame-work of care to be established and provide clear lines of communication. Essential information such as the name of the treating consultant should be exchanged in case an emergency arises.
Promoting hygiene
Viral infections such as the common cold are the most common cause of chest infections for people with CF. One of the most important things that they and the people they have contact with can do is to minimise exposure to harmful germs and bacteria. Coughing and sneezing are common modes of transmission. Simple hand washing and/or using antibacterial hand gel and covering one’s mouth when coughing or sneezing prevents virus transmission. It is imperative that all students and teachers maintain this level of hygiene.
Supporting the ‘CF diet’
When teaching your class about nutrition, be sensitive to the student with CF who has a diet that may appear unhealthy by most nutritional standards. Students with CF are encouraged to consume large meals that are high in calories, fats, protein and salt. Some struggle to maintain this daily intake of between 120-150% of the recommended daily allowance and will benefit from support. A young child torn between eating and playing may want to eat a little and run to the playground. He or she needs time and encouragement to eat every meal. Some students need additional snacks to help maintain proper nutrition. Older students face expectations about fad diets from other students.
Students with CF are taught to self-administer enzyme capsules when eating and should be allowed to do so. A discussion with the child’s care-giver will determine whether the student is sufficiently old and capable of self-administering. As enzyme capsules are supplements they do not pose a risk to other students if accidentally consumed.
Supporting the need for exercise and combating dehydration
Exercise should be encouraged as much as possible for students with CF. It is fundamental to their treatment, helping to strengthen the lungs, muscles and bones and assists in clearing mucus from the lungs. Exercise is also of emotional benefit. It can help lower stress levels, promote self esteem and assist in building friendships. How much he or she is able to participate will depend on that individual’s level of health and how they feel from day to day. The student with CF may cough more during exercise but should always be encouraged to participate in the activity. This may be embarrassing to him or her, and if so a discussion between the student, parents and teacher can help by agreeing a strategy to manage the embarrassment.
Most people with CF have a reduced tolerance to heat, especially when exercising. Their loss of salt and risk of dehydration and electrolyte imbalance should be managed by the student carrying water or a sports drink, eating salty snacks or taking salt tablets during hot weather.
Dehydration can lead to tiredness, difficulty concentrating, feeling grumpy or irritable, loss of appetite, nausea or vomiting, headaches, cramps, thirst and sunken eyes. It can also make mucus harder to cough up as it becomes even stickier. Bowl blockages can also occur.
Appreciating the effects of CF on the student
Having CF may affect a student in many personal ways that should be appreciated by teachers and are described fully under ‘Effects of the Condition on the Individual’. In summary, these include:
- the need for time away from study for hospitalisations and medical appointments – parents may request that teachers provide work for the student to undertake in hospital.
- fatigue and reduced endurance – a student with CF may tire more easily than their peers for a number of reasons including: waking early for morning treatments, having a chest infection; having low lung function and malnutrition.
- health regimen – students are encouraged to be active participants in their regimen including the self-administration of medications. Aside from consuming enzyme capsules, students may inhale medications like Ventolin or monitor blood sugar levels and inject insulin for CF related diabetes. They may also need to conduct airway clearance techniques at school including the use of inhaled medications,
- personal image – delayed puberty and reduced height and weight affect body image. Teachers can assist by emphasising with the student who has CF and expressing to other students that appearance is only one thing that “makes you who you are”. It is the student’s choice whether or not to tell others about their condition and should be supported and respected in their decision.
- infertility – this is common in boys with CF. It is particularly important during sex education that males with CF still be encouraged to use protection with an emphasis on STD’s.
Avoiding an over-protective attitude
Children with CF wish to be treated the same as any other child. There are just some things they can’t do and some things they must do which are different to their school friends.
Intervening to ensure a positive school environment
Students with a condition may be a target of bullying and teasing. There can be many reasons why they may be a target such as being small in stature, low in weight, taking enzyme capsules, eating extra food including high calorie or “junk” food, persistent coughing and spitting out mucus or having time away from school. They may have a feeding tube, portacath or PICC line. Unfortunately some students may make jokes about CF being a life-shortening condition and this can be traumatic for the individual. Some students with CF may already have self esteem issues about their condition and bullying on top of that can disrupt their education, reduce enjoyment of school and compound further esteem issues.
For additional comprehensive information it is highly recommended that school staff contact Cystic Fibrosis Victoria for a copy of their Schools Information Pack. To view leaflets on teachers working with students of all ages with cystic fibrosis and to find other resources go to:
Links to other useful online resources for schools on strategies in responding to a child/young person with this condition
Association for Children with a Disability: www.acd.org.au
Victorian Disability Services: https://www.vic.gov.au/health-community/disability-services/health-support-services.html
Effects on the Individual
The Condition’s Effects on the Child / Young Person
Effects on the individual
Cystic Fibrosis (CF) affects a person’s life in many ways and at times considerably challenges his or her health and lifestyle. People with CF may find it difficult to study or work full-time while coping with hospitalisations, fatigue and a demanding treatment regimen. Some adults choose to relinquish full-time employment to better manage their health and this may impact seriously on personal income. Despite these pressures, research has shown that people with CF are no more likely than those without the condition to suffer from depression or mental illness.
Hospitalisations
Time away from school or work is inevitable for people with CF. Many will have 2 week ‘tune-ups’ to have intravenous antibiotics and extra chest therapy. Some children and adolescents with CF do not experience periods of hospitalisation until later in life while others and adults may require frequent admissions. Being in hospital and not being with family and friends is very distressing for the person with CF. While in hospital, children strive to keep abreast of their schoolwork and parents may request that teachers provide work for the child. Aside from admissions, all people with CF require hospital based check-ups that may take a full day.
Fatigue and Endurance
A person with CF may tire more easily than their peers for numerous reasons including:
- Waking early for morning treatments – this may in itself be very tiring for someone with CF, especially if they have low lung function
- Having a chest infection – which may require longer sessions of airway clearance and more coughing. Coughing absorbs energy and can be very frustrating, especially if the person is trying to maintain quiet in a classroom or workplace.
- Low lung function – a person with CF who has low lung function will tire more easily than if they had high lung function. This is due to: burning up energy with increased breathing; having lower oxygen saturation levels; coughing more; spending more time doing airway clearance techniques; and having a lower appetite due to tiredness. Someone with low lung function may find it harder to exercise but should be encouraged to do so because of numerous benefits.
- Malnutrition – people with CF require a high energy diet of between 120-150% of the recommended daily allowance (RDA). They are encouraged to consume foods high in calories, protein, fat, salt and sometimes sugar. Meeting this requirement can be a struggle for some and many people with CF look underweight. Some may require a feeding tube to meet their dietary needs.
Health regimen
People with CF are encouraged to take responsibility for their health regimen from a young age. Children are encouraged to be independent with all their medications and to recognise the signs and symptoms of their condition. Some of the medication self-administered in early life may include:
- Inhaling medication such as Ventolin
- Taking enzyme capsules with food and salt tablets to prevent dehydration
- Monitoring blood sugar levels and injecting insulin for CF related diabetes (CFRD)
The length and complexity of treatment regimens varies greatly. People with lengthy and or complicated regimens may often have difficulty finding sufficient time each day for treatment.
Image
Many people with CF are concerned about symptoms that affect their image, particularly during adolescence. Young people with reduced height and weight or delayed puberty can have a hard time. They often look younger than their peers. Worse, they may be treated as though they are younger than they actually are. Another concern is that some are tempted to skip taking enzymes to lose weight. Adolescents and adults with CF sometimes find it difficult to do the things their friends enjoy, such as joining late night parties and attending events held in smoky venues. Smoke filled rooms are particularly hazardous for people with CF. All people with CF face the difficult decision of whether and when to tell others about their condition.
Effects on those close to the child / young person
Caring for a child or adolescent with Cystic Fibrosis (CF) can be very demanding for the parents and caregivers. They facilitate their child’s health regimen and provide the education and the motivation needed for the person with CF to take responsibility for their own treatment. In addition, parents take the child to regular hospital appointments at specialist CF centres based in Melbourne. At times people with CF will be admitted to hospital for intensive treatment and the parents will support their child’s care.
Caring for a child with CF is also expensive. Families must meet the high cost associated with ensuring that their child is kept as well as possible. Ongoing expenses include medication, enzymes, vitamins and other supplements, high calorie foods, physiotherapy equipment and nebuliser pumps. Some couples find that one parent needs to relinquish their job in order to care for the needs of their child. This places an additional financial burden on the family.
A recent study has shown that the primary care-giver of a young child with CF has a one in three likelihood of suffering from depression, compared to the national average of one in five. Carers often seek the support of others who are dealing with the same or similar issues. They may also seek opportunities for respite from the daily demands of their child’s health regimen.
Research has shown that siblings of a child with CF often feel the effect of growing up with a brother or sister with a progressive condition. Some display anxiety over the future of their sibling or feel overshadowed by their brother or sister. They can become angry and may resent the attention given to their sick sibling by their parents. Yet, some siblings develop considerable independence while spending time in the care of friends or relatives when their brother or sister is in hospital. Other siblings display a greater understanding of the needs of people who are sick or disabled.
Siblings of a child with CF need to have particular attention paid to their needs and require help when they experience difficulty dealing with the condition.
“In their shoes” – stories from children / young people with the condition
Eliza, aged 16
I was born June of 1994, and I have this crappy disease. It has indeed made my life challenging. I dont go to school, I’m on homebound, due to all the sicknesses that goes around, so goodbye to socialization. I dont have many friends because people either see me as “nasty” or they just slowly leave my life. I’m in the hospital a lot more than some CF’ers. Some say its real hard just dealing with like 3 times, in twelve years. Thats nothing compared to mine, which is… 2-3 times every year. and if I get sick, its more times. I have very very poor weight gain. I just turned 16, in June & I jump from about 80-95 pounds. I have never reached 100 yet. Thats my goal, but each time I try, I get sick and I lose a good 15 pounds in just a week or two. I eat a lot, and I’ve tried just about everything with nutrition drinks. Nothing just seems to work. I get picked on more than I should about my weight, but I can’t help it. I get called “anorexic” a lot too. I am border-line diabetic. I am also, on the normal CF medications which are a total DRAG! They always interfere with things I want to do, or am in the middle of doing. I have also, almost died due to this disease. I also suffer from depression & anxiety problems. I try to have a normal life, but it is very hard to do. When I grow up, my dream is to become a nurse, and work with pediatrics and people who have CF. I hate it when people say “I know what you are going through” or “I know what you’re talking about”, when they really have no idea. This way, I can talk to kids, and tell them that “I as well have CF,and I actually do know what you go through” Well, thats my story as of now.
Eliza, aged 13
I was born in December of 1994 and was immediately diagnosed with a chronic illness called Cystic Fibrosis, or CF. As a child I never really understood what CF was, I just thought it was an annoying condition that made me cough a lot. At the age of three, my mother died, which was hard for me to cope with. Dealing with CF and mum’s death was the hardest thing I’ve ever done and my dad didn’t really know what to do. CF has effected my life more than I could ever imagine it would. I’ve been to hospital three times in twelve years, and one of those times I was very close to actually dying. Every day I have an average of twenty-six tablets and five times a day I do breathing excercises to help clear my lungs. At school, no one really understands why I cough all the time, and many people think that CF isn’t a very major or bad disease. It bothers me that there is no cure as yet, but the fact that so many people have CF helps me know that I have support. At home, doing my medications and excercises cuts into my free time a lot, and I often have to stop fun activities just to do them. Now I am learning more about my disease. I never realised it was life-threatening until earlier this year, and I never actually thought that my life was going to be so severely changed by the effects of the disease that I have learnt to hate.
Dean, aged 18
“Having CF didn’t really affect me when I was little. I was only in hospital once a year. I don’t think it starts to matter until you really understand it. For me that was when I turned twelve. I started going to high school and suddenly I was around all these different people. At primary school there were less people and everyone was kind of close to each other and I didn’t think about it much. It changed when I went to high school.
CF began to affect me seriously when I was sixteen. It was my last year at school. It was a bad year, my worst. I was getting really bad colds and lots of chest infections mainly. The antibiotics would relieve it for a while. I’d be three weeks in hospital, one week at home and then back into hospital. It was hard because I kept missing school, lots of day off, and I got behind in my school work.
The worst part about being in hospital is that it’s a totally different lifestyle. In hospital everything’s a routine whereas at home you’re pretty much free to do what you want. I found missing my family the hardest. When you’re away from them, it’s like they’re not there, you know? You get separated from normal life, from what’s going on in their lives. It’s really good when they visit. At the start of the year they were really worried about me, but later on it almost became a routine, ‘Oh, he’s back in hospital again.’ Everyone got sick of it. …”
Leesa, aged 15
“People can tell there’s something wrong with me because I cough a lot. I used to say I had asthma, but now I say it’s complicated; asthma and something else. My closest friends know I’ve got CF, but others don’t. Most just assume it’s asthma. I read that Cameron, another CF patient who died, always kept it a secret, so I’m not the only one who does. I’d like everyone to know I’ve got CF but it’s so hard to sit down and explain.”
Jason, aged 17
“Doing everything I have to for my treatment takes a lot of time each day. Too long. I get angry when I’m told to do things, especially when I don’t want to. I shut down and don’t talk to anyone. I come right after a while; time’s the only thing that brings me out again. I don’t get angry about being sick. What’s the point? It’s my way of life. The hardest thing about having CF is not being able to do things, like contact sports. I used to play a lot of sport. I loved footy before I was twelve, but I had to stop because I got a portacath put in. … I go to the gym every day and I enjoy it although I get sick of it too. I usually feel better after I’ve been. The gym instructors are okay.”
All three story extracts (above) are reproduced with permission from: Cameron, Heather (ed.), “Different but the same. Young people talk about living with serious illness.” Lothian, Port Melbourne, 1998
Maddison, aged 11
I have CF as well as both CF related Diabetes and CF related liver disease and I have to say that CF itself is not too bad. Before I was put on the transplant list after my liver failed in June 2009, I only went into hospital for a tune-up every 18-24 months. The least time I ever had between hospital visits was a year or so. My mum and I have always handled CF quite easily – it was only when I was very young that I would be too skinny – and that was only ever after returning from hospital. I’ve almost always eaten well and had a 110% lung function test, after I had learnt not to suck on the mouthpiece as a baby or toddler.
Sometimes though, I would overhear other patients complaining about CF; “I’m over this illness!” or “There are too many tablets!” or “This lung function machine is cursed! I am 90%, not 82%!”
Sometimes I would see teenagers or adolescents refusing to have their creon because they were “too full” to have two measly capsules. I would be five and have my tablets, then sit watching others refuse. The one thing I used to run away from would be a canula / drip / IV. But I got over this fear when I was- it just made it worse to be kicking and trashing.
CF really isn’t that bad and twenty-five tablets a day are nothing. I have twenty-five at breakfast, not to mention lunch, afternoon, dinner and overnight ones as well. I think too many people complain when they should just go and live life to the fullest while they can – there’s only so much you can do in 35 years.
Janelle, aged 17
This excerpt is from the transcript of ‘Background Briefing’ broadcast on ABC Radio National on Sunday 13 January 2008. In his presentation Dr Atul Gawande of the United States is discussing why some doctors produce better outcomes than other doctors. In this example, he discusses how a specialist in Cystic Fibrosis works with an adolescent to overcome her reluctance to maintain her treatment regime. For further details of Dr Gawande’s work see: www.gawande.com
“‘I could give you lots of examples of this, but I’m going to tell you about one that I found the most interesting Bell Curve, and that’s the Bell Curve for cystic fibrosis. The reason I find cystic fibrosis interesting is because it’s medicine the way we want all of medicine to work. Children with cystic fibrosis are born with a genetic disease that we have no cure for. It’s a disease, by the way, that gums up their lungs, interferes with their ability to digest food, and it is the disease they will die from some day. So we take care of those children in 117 focused CF centres and they’re high volume centres of excellence. All of the people who participate in those centres are super-specialists in the disease. They follow detailed guidelines, more detailed guidelines than we have for most of the rest of medicine, and they all participate in clinical trials. This is what we would love for everything that we do in medicine, isn’t it? And yet even they have a Bell Curve, and it’s a wide curve. The average survival for an American with cystic fibrosis in a typical centre, is 33 years. But at the best centre it’s 47 years, a 14 year difference.
And this is despite how wonderfully trained everybody is, how careful they’re controlling the quality, how much they’re trying to keep everybody on a regimen of careful guidelines. So I wanted to find out exactly why there would be this kind of variability. So what I did is, I described going to a centre, which was at the middle point actually, just below the middle, for the care of children with cystic fibrosis, and it’s a centre in Cincinnati, the University of Cincinnati Children’s Hospital. And I went there looking for trouble, problems. They were kind enough to let me in. And I’ll tell you what I found was a hospital with a great reputation. This is a place that routinely ranks in the Top 10 of American children’s hospitals. The polio vaccine, the Sabin polio vaccine was discovered there, that’s the oral polio vaccine we depend on for the global eradication of polio. The head of the Cystic Fibrosis Centre is someone who had actually developed several of the guidelines that we depend on nationally for how to treat cystic fibrosis. He had written the chapter in Nelson’s Paediatrics, which is the textbook of paediatric care for many physicians. So why, then, were they not at the top?
Well one answer could be that, well, they have a great reputation, but what’s the care really like? And so I went with the patients in clinic for a full day. And what I found was care just the way you’d want it, with attentive people, conscientious, who were very aware of the current knowledge in research in cystic fibrosis, who were devoted to their patients, and the patients were devoted to them, they felt well cared for. And yet there they were, in the middle. So then I decided what I needed to do was see a place at the top of the curve, because surely what they had at that place is a secret drug, because how else to explain why they would be having 14 year longer survival there.
Well the top place turns out to be the University of Minnesota Program in Minneapolis, run by a guy named Warren Warwick. And I went, and I found that they didn’t have a secret drug, they were following the same guidelines that everybody else was following, they were using the same treatments and they were getting different results. One explanation could be that the kids had a different genetic form of CF. But it turns out that they are not any more likely or any less likely to have the most severe form of CF, there’s one gene called the Delta-F508 mutation. Their kids are just as sick there as they are elsewhere, and yet they survive longer.
So I had a hard time trying to put my finger on what might be the difference. Until I spent a day in clinic there, and I wanted to read to you a little bit about what it was like to see a patient in clinic there, because it seemed that everything they did was the same in one sense, following the same treatment guidelines, and yet completely different.
In the clinic one afternoon, I joined Warren Warwick as he saw a 17-year-old high school senior named Janelle, who had been diagnosed with CF at the age of 6, and had been under his care ever since. She’d come for her routine 3-months check-up, she wore dyed black hair to her shoulder blades, black eyeliner, 4 ear-rings in each ear, 2 more in an eyebrow, and a stud in her tongue. Warwick was 76 years old, tall, stooped and frumpy-looking, with a well-worn tweed jacket, liver spots dotting his skin, whispey grey hair, by all appearances a doddering, mid-century academic.
He stood in front of Janelle for a moment, hands on his hips, looking her over, and then he said, ‘So Janelle, what have you been doing to make us the best CF program in the country?’ She muttered, ‘It’s not easy, you know.’ They bantered. She was doing fine. School was going well. Warwick pulled out her latest lung function measurements. There had been a slight dip. Three months earlier, Janelle had been at 109% of normal. Her lung function indicated she was actually doing better than the average child without CF. Now she was at around 90%. That was still pretty good. And I knew from looking at the numbers in Cincinnati, that some ups and downs are to be expected. But this was not the way Warwick saw the results.
He knitted his eyebrows. ‘Why did they go down?’ he asked.
Janelle shrugged.
‘Any cough lately?’
‘No’.
‘Colds?’
‘No’.
‘Fevers?’
‘No’.
Was she sure she’d been taking her treatments regularly?
‘Yes, of course’.
‘Every day?’
‘Yes.’
‘Did she ever miss treatments?’
‘Sure. Everyone does once in a while.’
‘Well how often is once in a while?’
And then slowly, Warwick got a different story out of her. In the past few months it turned out she’d barely been taking her treatments at all. He pressed on.
‘Why aren’t you taking your treatments?’
He appeared neither surprised nor angry, he seemed genuinely curious, as if he’d never run across this interesting situation before.
‘I don’t know’, she said.
He kept pushing. ‘What keeps you from doing your treatments?’
‘I don’t know’.
‘Up here’. And now he was pointing at his own head. ‘What’s going on?’
‘I. Don’t. Know’, she said.
He paused for a moment. And then he turned to me, deciding to take a new tack. He said, ‘The thing about patients with cystic fibrosis is that they’re good scientists. They always experiment. We have to help them interpret what they experience as they experiment. So they stop doing their treatments, and what happens? They don’t get sick. Therefore they conclude ‘Dr Warwick is nuts’. But, let’s look at the numbers.
He’s still saying all this to me, he was completely ignoring Janelle. He went to a little blackboard he had on the wall. It appeared to be well-used. He said, ‘A person’s daily risk of getting a bad lung illness with CF is 0.5%’, and he wrote the number down.
Janelle rolled her eyes. She began tapping her foot. ‘The daily risk of getting a bad lung illness with CF plus treatment’, he said, ‘is 0.05%.’ and he wrote that number down. ‘So when you experiment, you’re looking at the difference between a 99.5% chance of staying well, and a 99.95% chance of staying well. Seems hardly any difference, right? On any given day you basically have a 100% chance of being well. But, it’s a big difference.’
He went to the board and worked on the calculations. He said, ‘Sum it up over a year, and it is the difference between an 83% chance of making it through the year, without getting sick and ending up in the hospital, and only a 16% chance.’
Now he turned to Janelle. He asked her, ‘How do you stay well all your life? How do you become a geriatric patient?’ Her foot finally stopped tapping. ‘I can’t promise you anything, I can only tell you the odds.’
And in that short speech I realised was the core of Warwick’s world view. He believed that excellence came from seeing on a daily basis the difference between being 99.5% successful, and being 99.95% successful. Many things human beings do are like that. Catching flyballs, manufacturing microchips, delivering overnight packages. Medicine’s only distinction is that lives are lost in those slim margins.
And so, he went to work on finding that margin for Janelle. Eventually he figured out that she had a new boyfriend. She had a new job, too, and was working nights after school. The boyfriend had his own apartment, and she was either there or at a friend’s house most of the time. So she rarely made it home to take her treatments. At school, new rules required her to go to the nurse for each dose of medicine during the day, so she skipped going. ‘It’s such a pain’, she said.
He learned that there were some medicines she took and some she didn’t. One she took because it was actually the only thing that she felt made a difference. She took her vitamins, too. ‘Why your vitamins?’ ‘Because they’re cool’. The rest, she ignored.
Warwick proposed a deal. Janelle would go home for a breathing treatment every day after school and get her best friend to hold her to it. She’d also keep her medications in her bag, or her pocket at school, and take them on her own. ‘The nurse won’t let me’, she said. ‘Don’t tell her’, he said. And thereby deftly turned taking care of herself, into an act of rebellion.
So far, Janelle was OK with this. But there was one other thing he said. ‘She’d have to come to the hospital for a few days of therapy to recover the lost ground.’ She stared at him. ‘Today?’ ‘Yes, today’. ‘How about tomorrow?’ ‘We failed, Janelle’, he said, ‘it’s important to acknowledge when we’ve failed.’ And with that, she began to cry.
There are a few attributes to the people who are in the institutions that are at the top of the curve, for what they do, in something like medicine. One, and you saw this in Warwick, is that they have the capacity for diligence, attention to detail. And you saw it in the way that he dove down into Janelle’s life enough to grasp not only that she was not taking her medicines, but then also why. The way the boyfriend played into her life, her job, everything else.”
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CIA Community
Directory of Web Sites of Concerned Organisations
NB: The links to the websites will open up in a new window.
22q Foundation of Australia and New Zealand
Alzheimer’s Australia Victoria
Ankylosing Spondylitis Victoria
Asbestos Council of Victoria/GARDS Inc
Asbestoswise
Asthma Victoria
Australian Leukodystrophy Support Group Inc.
Australian Pain Management
Berrill & Watson
Brainlink
Breacan (Now called Counterpart)
Cardiomyopathy Association of Australia Ltd.
Carers Victoria
Childrens Tumour Foundation of Australia
Crohns and Colitis Australia
Coeliac Victoria and Tasmania Inc
Continence Foundation Australia
Cystic Fibrosis Community Care
Diabetes Australia – Victoria
Epilepsy Foundation
Emerge Australia (formerly ME/CFS Victoria)
Genetic Support Network Victoria
Goulburn Valley Primary Care Partnership
Haemochromatosis Australia
Haemophilia Foundation of Victoria
Heartbeat Victoria Council Inc
Heart Foundation Victoria
Hepatitis Victoria
Huntingtons Victoria
Inner East Primary Care Partnership
Kidney Health Australia
Knox Community Health Service
LifeCircle
Limbs4Life
Lung Foundation Australia
Monashlink Community Health Service
Musculoskeletal Australia
MS Australia
MS Australia ACT/NSW/VIC
Ovarian Cancer Australia
Palliative Care Victoria
Parkinsons Victoria
Pelvic Instability Association Inc
Peninsula Health
Polio Australia
Positive Women
Post Polio Victoria
Prostate Cancer Foundation of Australia
Scleroderma Australia
Scleroderma Victoria Inc
Stroke Association of Victoria
Stroke Foundation (The National Stroke Foundation)
Thalassaemia and Sickle Cell Australia
ThorneHarbourHealth (formerly Victorian AIDS Council)
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22q Foundation Australia and New Zealand
22q Foundation Australia and New Zealand supports people affected by 22q11.2 Deletion Syndrome.
22q11.2 Deletion Syndrome is a genetic syndrome. It is the result of a submicroscopic deletion on the long arm of Chromosome 22 in the “q11”region – deletion 22q11.
It affects approx. 1 in 2000 – 3000 persons making it the second most prevalent genetic syndrome after Down syndrome.
It is the most common genetic syndrome associated with cleft palates and is
the second most common genetic syndrome associated with congenital heart defects.
Ninety nine per cent of the 22q11.2 DS population will have a learning difficulty or disability and 30% of the 22q11.2 DS population will develop a mental illness. (Nearly half (45%) of the general population (non VCFS/22q11.2DS) in Australia will experience a mental disorder at some stage in their lives.) It has more than 180 anomalies associated with it.
Contact by email: www22q.org.au
Alzheimer’s Australia Victoria
Alzheimer’s Australia Victoria is the peak body in Victoria for people living with dementia. It provides leadership in advocacy, policy, services and research. it is part of the national Alzheimer’s Australia federation.
Contact: 1800 100 500
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Ankylosing Spondylitis Victoria
Ankylosing Spondylitis Victoria Inc peer support group is an organisation of people who wish to improve knowledge of AS and the ability to manage the condition. Our group embraces the goals and objectives of people and families living with Ankylosing Spondylitis.
Contact: Annie McPherson
Telephone: 0408 343 104
Email: asvicweb@gmail.com
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Asbestos Council of Victoria/GARDS Inc
The Asbestos Council of Victoria (ACV) works to raise the level of asbestos awareness in the community, industry and at all levels of government.
Gippsland Asbestos Related Disease Support Inc (GARDS)
Provides support and information to sufferers, their families and carers. This includes home visits by GARDS volunteers, a telephone support service, and drop-in services at GARDS’ office. GARDS Support also conducts meetings where guest presenters are invited to provide information about regional support services and other areas of interest and assistance. The meetings also provide a gathering place for experiences. GARDS Support is open to anyone exposed to asbestos or suffering from asbestos disease.
Asbestos Council of Victoria (ACV) Advocacy
The ACV is the organisational, activities and advocating arm of GARDS Inc.. Advocacy is focused on improving health support services and compensation arrangements to asbestos sufferers and their families, ensuring asbestos related issues are kept in the public eye and eventually, ridding our environment of asbestos.
Contact: Mrs Vicki Hamilton OAM
Address: PO Box 111, Moe Victoria 3825
Telephone: 0351 277 744 (all hours)
Fax: 03 5126 0354
Email: gards@wideband.net.au
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Asbestoswise runs two suppport groups for people affected by an Asbestos Related Disease (ARD).
The ARD Support Group is open to people who have been diagnosed with an ARD, their carers, families and friends. The group provides a forum where people can meet and discuss issues that are pertinent to their circumstances. It offers friendship and understanding in an inclusive and safe environment.
The ARD Bereavement Support Group focuses on support for carers, families and friends. The group is about giving and receiving support, providing the opportunity to form long term friendships, sharing valuable knowledge and experience with the rest of the group.
Contact: Renee Webb
Telephone: (03) 9654 9555
Email: renee@asbestoswise.com.au
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Contact: 491-495 King Street, West Melbourne Victoria, 3003
Telephone: (03) 9326 7088
Fax: (03) 9326 7055
Email: reception@asthma.org.au
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Australian Leukodystrophy Support Group Inc.
Leukodystrophies are a group of degenerative genetic diseases that affect the nervous system. They most often take hold during childhood with many losing the ability to see, hear, walk, sit up or even swallow. There is no cure for Leukodystrophy and the impact on families is devastating.
Contact: We are here 10am to 4pm Monday to Friday.
Nerve Centre Building
54 Railway Road
BLACKBURN VIC 3130 Australia
Toll Free Telephone: 1800 141 400
Telephone: (03) 9845 2831
Mobile: 0418 755 994
Email: mail@alds.org.au
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Australian Pain Management Association
The Australian Pain Management Association is available to help all people living with pain in Australia.
“Pain is the biggest moral health issue in Australia today.” – Professor Michael Cousins, AM
Australian Pain Management Association Inc. (APMA)
GPO Box 2104, Brisbane 4001
Secretary: Ms Elizabeth Carrigan
Email: secretary.apma@bigpond.com
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Berrill & Watson are superannuation and litigation specialists and have over 100 years of combined experience.
Contact: Berrill & Watson
Berrill Watson
Level 1, 650 Mount Alexander Road
Moonee Ponds VIC 3039
PO Box 179
Moonee Ponds VIC 3039
Telephone: (03) 9448 8048
Email: info@berrillwatson.com.au
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Brainlink Services Ltd is a statewide service that is dedicated to improving the quality of life of people affected by conditions of the brain and providing support to their families.
Contact: Brainlink 54 Railway Road, Blackburn, Victoria 3130
Telephone: (03) 9845 2951
Fax: (03) 9845 2882
Email: info@brainlink.org.au
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Counterpart (formerly Breacan)
Counterpart is a unique information and support service for Victorian women living with breast or gynaeocological cancers. As a service of Women’s Health Victoria, Counterpart presents an opportunity for women to connect and speak with trained peer support volunteers. The volunteers have all experienced cancer themselves or cared for someone who has. Counterpart is a free statewide service that offers woman holistic support and information that works in tandem with their medical treatment and their existing support systems.
Ground floor, Queen Victoria Women’s Centre
210 Lonsdale Street Melbourne Victoria 3000
Telephone: 1300 781 580 (Peer support 10am to 2pm)
Email: info@counterpart.org.au
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Cardiomyopathy Association of Australia Ltd.
Nationally the Association provides support for people with Cardiomyopathy, their families and friends. This is by regular social and informative meetings in several States, newsletters and a phonelink service.
Contact: Alistair Kerr PO BOX 273, Hurstbridge Victoria 3099
1300 362 787 – Heartline
1300 552 622 – CMAA Ltd.’s message bank for state contact details.
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Carers Victoria is the statewide voice for family carers. Carers Victoria represents and provides support to carers in the community.
Contact: Kath Waugh Level 1, 37 Albert Street, Footscray Victoria 3011
Telephone: (03) 9396 9500
Fax: (03) 9396 9555
TTY: (text phone for hearing impaired) 03 9396 9587
Email: library@carersvic.org.au
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Childrens Tumour Foundation of Australia
The Children’s Tumour Foundation is the leading organisation in Australia providing support, advocacy and information and research for people living with the neurofibromatoses: MF1 and NF2 and Schwannomatosis.
Contact: Natalie McLean
Murdoch Children’s Research Institute
Royal Children’s Hospital
50 Flemington Road Parkville VIC 3052
Telephone: (03) 9936 6258
Email: Natalie.McLean@ctf.org.au
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Coeliac Victoria and Tasmania Inc
Coeliac Victoria and Tasmania is a not-for-profit organisation committed to providing support, information and understanding to people diagnosed with coeliac disease or medically requiring a gluten-free diet. We have been the peak body for people with coeliac disease in Victoria and Tasmania-providing a single.credible source of information since 1974. We are the voice for coeliac disease-we advocate on your behalf.collaborate with health professionals, gluten-free manufacturers and we support research.
Phone: 03 9808 5566 or (freecall) 1300 458 836
Facsimile: 03 9808 9922
Email: victaseo@coeliac.org.au
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Continence Foundation Australia
The Continence Foundation of Australia (CFA) is the peak body for continence promotion, management and advocacy. The Continence Foundation of Australia manages the National Continence Helpline freecall 1800 33 00 66 on behalf of the Australian Government. The Helpline is a free service that provides confidential information and advice about bladder and bowel problems and continence products and services.
Contact: Rowan Cockerell
Chief Executive Officer
Continence Foundation of Australia
Suite 1, 407 Canterbury Road, Surrey Hills VIC 3127
Telephone: (03) 8962 8400
Email: r.cockerell@continence.org.au
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Contact: National Office: Suite 4 Level 1, 363 Camberwell road, Camberwell Victoria, 3124
Telephone: (03) 9815 1266
Email: admin@crohnsandcolitis.com.au
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Cystic Fibrosis Community Care
Contact: Office Manager 80 Dodds Street SOUTHBANK VIC 3006
Telephone: (03) 96861811
Toll free: 1800 633 685
E-Mail: admin@CFCC.org.au
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Contact: Susanne Baxandall, Advocacy & Information Officer
570 Elizabeth Street, Melbourne Victoria, 3000
Telephone: (03) 9667 1777
Fax: (03) 9667 1778
Email: mail@diabetesvic.org.au
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At Dianella we are working together with our community to celebrate our vision, and live our values.
We share a vision of Health, Wellbeing and Quality of life for ALL! In a community which is empowered, has opportunities, is caring and works together. We respect each other and our community We deliver excellent services We know that together we do best We foster professionalism amongst all staff We embrace a social model of health
Contact: Main campus -Broadmeadows 35 Johnstone St, Broadmeadows 3047
Telephone: Main Switchboard (03) 8345 5678
Medical (03) 8345 5777
Dental Emergency (03) 8311 4400
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Epilepsy is the most common neurological condition in the world and around 4% of Australians will be diagnosed epilepsy at some stage in their lives.
Epilepsy is a disorder of brain function where there is a tendency to have unprovoked, recurring seizures as a result of abnormal bursts of electrical activity in the brain. Everyone’s experience of a seizure will be different to everyone else’s. Some people can have seizures every day, whilst others may only have a seizure occasionally.
For more information about epilepsy please contact the Epilepsy Foundation:
Contact: 587 Canterbury Rd Surrey Hills Victoria 3127
Telephone: 1300 761 487
Email: epilepsy@epilepsyfoundation.org.au
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Emerge Australia (formerly ME/CFS Australia)
Emerge Australia Inc (formerly ME/CFS Australia (VicTasNT) is a not-for-profit public benevolent institution dedicated to providing information, support and advocacy for people affected by Myalgic Encephalomyelitis (ME) more commonly known as Chronic Fatigue Syndrome (CFS) and their families, friends, carers; GPs and others health practitioners; educators and school staff; and the general community. Emerge’s vision is universal awareness and acknowledgement of ME/CFS as a medical condition. The mission of the organisation is to support and provide information for people associated with ME/CFS and to undertake advocacy.
Contact: Elizabeth Logan
PO Box 120, Prahran Victoria 3181
Telephone: 03 9529 1344
Email: information@emerge.org.au
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Genetic Support Network Victoria
GSNV is an umbrella organisation for people affected by any conditionwith a genetic component. GSNV offers education, information, support and advocacy as well as supporting condition-specific support groups. For more information and to find out how you can be involved visit our website.
Contact: Louisa di Pietro
10th floor, Royal Children’s Hospital Flemington Road, Parkville Victoria 3052
Telephone: (03) 8341 6315
Email: louisa.dipietro@gsnv.org.au
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Goulburn Valley Primary Care Partnership
The Goulburn Valley Primary Care Partnership (GVPCP) is a partnership of service providers across the Moira, Greater Shepparton and Strathbogie LGAs committed to strengthening the planning, coordination and delivery of primary care services through a range of collaborative strategies aimed at improving outcomes for the local communities.
Contact: Goulburn Valley Primary Care Partnership,
399 Wyndham Street Shepparton VIC 3630
Ph: (03) 58233 3285
Fax: (03) 5823 3299
Email: gvpcp@primarycareconnect.com.au
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Haemochromatosis Australia is the support, advocacy and health promotion group for people’s affected by haemochromatis (inherited iron overload disorder). we provide a range of educational resources including our website, print and electronic resources, public information sessions and the haemochromatosis informaiton line. We also focus on raising awareness in the community and among health professions to promote early diangosis and treatment.
Contact: Haemochromatosis Australia
PO Box 185, Wurtulla Queensland 4575
Phone: 07 54388267 or Mobile: 0435 375 450
Email: admin@ha.org.au
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Haemophilia Foundation of Victoria
HFV is committed to providing physical and emotional support and services for people affected by bleeding disorders, their families and carers in Victoria. The Foundation lobbies and advocates for quality services for members and provides education to the community about bleeding disorders.
Haemophilia is a blood clotting disorder in which one of the essential clotting factors is deficient. Haemophilia A, or Classical Haemophilia,is the most common form, and is due to the deficiency of Factor VIII. Haemophilia B, or Christmas Disease, is due to the deficiency of Factor IX. Von Willebrand’s disorder is another common blood clotting disorder.
Contact: Haemophilia Foundation Victoria,
13 Keith Street, Hampton East Victoria 3188
Ph: (03) 9555 7595
Fax: (03) 9555 7375
Email: info@hfv.org.au
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Health Issues Centre is at the forefront of promoting consumer perspectives in the Australian health system. It has gained a strong reputation around Australia for its public interest research and its analysis of the health system, particularly promoting awareness of consumer perspectives and needs.
Contact: Health Issues Centre Inc. Level 8, 255 Bourke St
Melbourne VIC 3000
Ph: (03) 8676 9050
Email: info@healthissuescentre.org.au
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Heartbeat Victoria Council Inc
Heartbeat Victoria Council Inc is an Australian not-for-profit organisation for ex-cardiac patients, relatives, carers, the health profession and friends. It is run by volunteers. HVCI advises and promotes support groups throughout Victoria in conducting peer support activities for people living with heart disease or a heart condition. These peer groups educate people on how to live with heart disease or a condition; guides them on how and where services and supports are located. HVCI also raises funds to improve cardiac services.
President
Robyn Fennell
Phone: 0474 866 474
Email: info@heartbeatvictoria.org.au
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The Heart Foundation saves lives and improves health through funding world-class cardiovascular research, guidelines for health professionals, informing the public through media and public health campaigns and assisting people with cardiovascular disease.
Level 2, 850 Collins Street, Docklands VIC 3008
Telephone: (03) 9321 1547 or Helpline on 13 11 12
Email: contactus@heartfoundation.org.au
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Hepatitis Victoria is a statewide organisation representing and catering to the needs of people with viral hepatitis, their carers, partners, family and friends.
Hepatitis Victoria works to achieve this through support, advocacy, education and consultation.
Our Vision That viral hepatitis is recognised as a health and social issue requiring understanding and appropriate resources That stigmatisation of and discrimination against people with viral hepatitis no longer occurs That people affected by viral hepatitis receive appropriate and accessible services, support, health and social care in order to maximise their quality of life That there are no new viral hepatitis infections
Contact: Hepatitis Victoria Suite 5, 200 Sydney Road, Brunswick Victoria, 3056
Hepatitis Infoline: 1800 703 003
Telephone: (03) 9380 4644
Fax: (03) 9380 4688
Email: admin@hepvic.org.au
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Huntington’s Victoria (HV) is a not-for profit organisation that was formed by several Huntington’s disease (HD) community members in 1973 to provide a safe, trusted space to receive support. Since this time, it has continued to evolve from a community-run entity into a professionally-run organisation. The community-focused collaborative nature of the organisation, in association with the complex nature of the disease, has inevitably led to Huntington’s Victoria being the first point of contact for those seeking support.
HV is the only specialist service in Victoria that supports and assists people impacted by HD. We aim to improve the quality of life for all people touched by HD in Victoria by connecting families to the vital support and services they need.
Huntington’s Victoria provides access to expert staff that assist in the navigation of the disability service sector, provide relevant information and connect people with respite and support services. We also work with Australian and global healthcare professionals, disability service providers and academics to increase awareness and understanding of HD, as well as the impact it has on individuals, families and communities.
Contact: Ms Tammy Gardner
16 Wakefield Street, Hawthorn, Victoria, 3122
Telephone: (03) 9818 6333
Facsimile: (03) 981817333
Email: info@huntingtonsvic.org.au
Inner East Primary Care Partnership
The Inner East Primary Care Partnership is a partnership of service providers committed to strengthening the planning, coordination and delivery of primary care services by using a range of innovative and collaborative strategies designed to improve outcomes for people using health and support services.
Contact:info@iepcp.org.au
3/43 Carrington Road, Box Hill Victoria, 3128
Telephone: (03) 8843 2305
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The Australian Kidney Foundation now trading as Kidney Health Australia was founded in 1968. As a non profit organisation, our vision is Australia free of kidney and urinary tract disease. Our mission is to be the lead organisation promoting kidney and urinary tract health through research, advocacy, education and health service excellence.
Kidney Health Australia provides support and education services to patients and their families with kidney disease throughout Australia.
Contact: Health Services Manager
344 St. Kilda Road, Melbourne, Victoria, 3004
Telephone: (03) 9674 4300
Fax: (03) 9686 7289
Email: vic@kidney.org.au
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Knox Community Health Service was established in 1996 to provide a high quality of community care and health education programs to Knox consumers. Knox Community Health Service delivers a range of services that improve the physical, mental and social well-being of individuals, families and communities in the City of Knox.
Contact: Belinda Lehane, PA to CEO
1063 Burwood Highway, Ferntree Gully, Victoria 3156
Telephone: (03) 9757 6200
Fax: (03) 9756 0144
Email: belinda.lehane@kchs.org.au
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The Leukaemia Foundation is the only national non-profit organisation dedicated to the care and cure of patients and families living with leukaemias, lymphomas, myeloma and related blood disorders. Since its formation in Queensland in 1975, the Foundation has been committed to improving survival for patients and providing much needed support. The Foundation provides a range of free services and programs including practical assistance, emotional support, information, education and peer support programs. The Foundation funds leading research into better treatment and cures through its national research program as well as supporting national facilities like the PwC Leukaemia and Lymphoma Tissue Bank and the Leukaemia Foundation Research Unit at the QIMR.
The Foundation’s vision is to create a world free of blood cancers and its mission is to care for patients and their families.
Contact: Support Services Manager
The Leukaemia Foundation
Freecall 1800 620 420
Email info@leukaemia.org.au
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LifeCircle’s purpose is to profoundly change the experience of dyaing and death for all Australians. Our vision is for people in Australia to live well right to the end of life. LifeCircle builds community capacity by helping carers to access personal networks, health care and local community services through its mentoring program. The organisation also provides educational seminars that aim to empower people to make informed decisons.
LifeCircle builds community capacity by helping carers to access personal networks, health care and local community services through its mentoring program. The organisation also provides educational seminars that aim to empower people to make informed decisions about advance care planning and the legal and financial issues that arise in later life. LifeCircle’s work helps people to see death as a natural part of life and strengthens carer resilience and community capacity to care.
LifeCircle Australia has a long history of working in the community. Formed from the merger of two organisations, Home Hospice and Life Goes On, LifeCircle Australia came into being on 1 July 2011.
Contact: LifeCircle Australia Ltd
153 Dowling Street
Woolloomooloo NSW 2011
Email: info@lifecircle.org.au
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Our Mission To empower amputees with information and support.
Objectives To achieve our mission and vision, Limbs 4 Life is pursuing the following objectives:
Information • Develop and distribute information resources to support individuals affected by amputation • Develop and distribute information resources to support amputee-related medical and allied health care professionals • Raise awareness of amputees and related issues within the community
Support • Deliver peer support to amputees through access to a network of trained Peer Support Volunteers • Provide on-going support to amputees through the provision of education, social or sporting programs.
Advocacy • Foster positive links and partnerships with government agencies, medical and allied health professionals and community organisations to promote the welfare, concerns and needs of amputees
Contact: PO Box 282 East Doncaster VIC 3109
Phone: 1300 782 231 (freecall)
Email: info@limbs4life.com
Lung Foundation Australia is Australia’s leading lung health charityfunding life changing research and programs to reduce the prevalenceof lung disease and to improve support and care for Australians.
Our mission is to improve ensure lung health is a priorityand reduce the impactof lung disease to patients and their familiesby driving quality research promoting lung health and timely diagnosis of lung disease and access to evidence-based health care.
Contact: PO Box 1949 Milton Qld 4064
Phone: 1800 654 301
Fax: 07 3368 3564
Email: enquiries@lungfoundation.com.au
Monashlink Community Health Service
Monashlink Community Health Service
Monashlink is an innovative and respected community health service that provides services to residents in the City of Monash from four main sites in Glen Waverley, Ashburton, Hughesdale and Clayton. It delivers a range of services and programs including the Early Intervention in Chronic Disease program.
Contact: Monashlink Telephone: 1300 552 509
Musculoskeletal Australia (or MSK) is the consumer organisation working with, and advocating on behalf of, people with osteoarthritis, rheumatoid arthritis, osteoporosis, back pain, gout and over 150 other musculoskeletal conditions.
263 Kooyong Road
Elsternwick Victoria 3185
Helpline: 1800 263 265 or 03 8531 8000
Telephone: 03 8531 8000
Email: info@msk.org.au
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MS Australia, the national peak body for Australians living with MS, provides leadership in advocacy, communications, brand and collaborative relationships to benefit Australians living with MS, improve treatments and accelerate research to ultimately find a cure for MS.
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Contact: MS Australia ACT/NSW/VIC
54 Railway Road, Blackburn Victoria, 3130
For all enquiries please make contact with MS Connect on 1800 042 138 (business hours) or email msconnect@msaustralia.org
Ovarian Cancer Australia is a national not-for-profit organisation providing support and advocacy for people affected by ovarian cancer, and is the peak body for ovarian cancer awareness and prevention. Our programs are focused in these important areas:
Promoting awareness of ovarian cancer and its symptoms in the community;
Giving Australian women and their healthcare providers a better understanding of the early signs of ovarian cancer;
Providing support networks and resources to women and their families and friends affected by ovarian cancer;
Advocating with medical professionals, government and the media for women diagnosed with ovarian cancer.
Queen Victoria Women’s Centre
Level 2, 210 Lonsdale Street Melbourne Victoria 3000
Telephone: 1300 660 334
Email: admin@ovariancancer.net.au
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Palliative Care Victoria
Lvl 2 / 182 Victoria Parade
East Melbourne, Vic 3002
Australia
Palliative care is specialist care for people living with an advanced or life-threatening illness and their families.
It includes controlling pain, making them comfortable, and responding to their physical, psychological, social, cultural, spiritual and emotional needs.
A primary goal of palliative care is to improve quality of life and to provide support to the family.
It is delivered in a way that respects the person’s wishes and needs, helps them to understand the dying process and to receive the support they need, including coping with loss and grief.
Palliative care is much more than care during the last days or weeks of a person’s life and is not a service of “last resort”. It is based on needs and can commence once it becomes apparent that a cure is not possible. Although a cure is not possible, active treatment may continue to manage the symptoms and course of the disease.
Palliative care is helpful for people with a wide range of life-threatening illnesses including cancer, end-stage heart, lung and kidney diseases, motor-neurone disease and dementia.
Palliative care can be provided in a range of settings – at home, in hospital, in a residential care service, and in a hospice.
Contact:
Phone: 03 9662 9644
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Parkinson’s Victoria is a statewide, not-for-profit organisation supporting people with Parkinson’s. We provide a range of information and support services to those diagnosed with the condition, as well as their families, carers, the general community and health care professionals.
Address: 587 Canterbury Road Surrey Hills Victoria 3124
Telephone: (03) 8809 0400
Email: info@parkinsons-vic.org.au
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Pelvic Instability Association Inc
The Pelvic Instability Association a not-for-profit peer support association based in Victoria. It provides information and support to women, families and health care providers affected by pregnancy related pelvic girdle pain (previously known as pelvic instability. This association offers website, support meetings and one to one support via phone, email and social networking.
Contact: President Jessica Danko
Telephone: (03) 9539 3217 (message bank)
Email: pelvicinstability@yahoo.com
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Frankston Community Health Service (FCHS) is located in the Frankston Integrated Health Centre (FIHC). Frankston Flinders Road (Hastings Road) Frankston Services and programs are provided from a range of sites and settings across Frankston and the Mornington Peninsula. Community-based services are offered to children, youth and adults across the area. They include health promotion and chronic disease self-management programs.
PO Box 52, Frankston Victoria 3199
Telephone: (03) 9784 8100
Fax: (03) 9784 8149
Email: fchs@phcn.vic.gov.au
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Polio Australia is the peak national body representing Australia’s polio survivors. Our vision is that all polio survivors in Australia have access to appropriate health care and the support required to maintain independence and make informed life choices.
Contact: Steph Cantrill
Title: Community Engagement Officer
Postal Address: PO Box 500, Kew East VIC 3102
Telephone: (03) 9016 7678
Email: steph@polioaustralia.org.au
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An organisation supporting women living with HIV/AIDS.
Contact: Stephanie Moore – Director
Telephone: (03) 92766918
Email: info@positivewomen.org.au
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Post Polio Victoria represents people with post polio health issues, promoting their needs to health services and decision makers. It advocates for increased awareness of post polio health issues and access to adequate post polio aware services. It aims for all people with health issues related to post polio to have the services, equipment and information to fully participate in the community.
Contact: Liz Telford
Ross House, 247-251 Flinders Lane, Melbourne VIC 3000
Telephone: 0431 702 137
Email: postpoliovictoria@gmail.com
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Prostate Cancer Foundation of Australia
Prostate Cancer Foundation of Australia is the peak organisation for prostate cancer. Our mission is to reduce the impact of prostate cancer on Australian men, their partners and families. we do this by raising awareness and education in the community, funding quality research and supporting men through the 84 local community PCFA support groups.
Contact: A. Giles, CEO
Telephone: (02) 9438 7000
Email: agiles@prostate.org.au
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Scleroderma Australia exists to support those suffering from scleroderma, as well as their carers, familiy and friends.
Contact: Click here for the contact form on the Scleroderma Australia website
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Scleroderma Victoria is run by volunteers to support Victorians with scleroderma, promote awareness of the condition and encourage research. There are 320 members as at 30 June 2008.
Contact: Gene Swinstead, President
St Vincent’s Hospital
41 Victoria Street, Fitzroy Victoria 3065
Telephone: (03) 9288 3651
Email: enq@sclerodermavictoria.com.au
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Stroke Association of Victoria
Stroke Association of Victoria Inc (SAV) is a volunteer organisation assisting stroke survivors and their families throughout Victoria.
It is a network of people whose lives have been changed by a stroke, either to themselves or to someone for whom thy are a carer. These people now give their time supporting carers and stroke survivors and spreading the message of stroke awareness to the community at large.
Contact: 03 9670 1117 (8 am to 4 pm) or 1300 434 233 (regional callers).
PO Box 88
Flinders Lane Victoria 8009
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Stroke Foundation (The National Stroke Foundation)
The National Stroke Foundation is a not-for-profit organisation that works with the public, government, health professionals, patients, carers and stroke survivors to reduce the impact of stroke on the Australian community. We are dedicated to raising awareness, preventing stroke, facilitating research, improving treatment and making life better for stroke survivors.
Contact: Jo Smith, Project Officer
Level 7, 461 Bourke Street, Melbourne Victoria 3000
Telephone: (03) 9670 1000
Fax: (03) 9670 9300 StrokeLine – 1800 787 653
Email: jsmith@strokefoundation.com.au
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Thalassaemia and Sickle Cell Australia
Thalassaemia and Sickle Cell Australia
Address: Moorleigh Community Village
Barry Neve Wing
92 Bignell Road Bentleigh East Vic 3165
Post: P.O. Box 3076
Moorabbin East VIC 3189
Telephone: 61 3 7015 5637
Email: info@tasca.org.au | Website: www.tasca.org.au
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The Type 1 Diabetes Network is a consumer group run for and by people with type 1 (autoimmune) diabetes. Activities include online communities for young adults: www.realitycheck.org.au and parents www.MuntedPancreas.com. There are also educational resources, notices of networking events and research into the experiences and the health services use by people with type 1 diabetes.
Contact: Colleen Clarke
Telephone: 0414 281 539
Email: colleen@d1.org.au
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As a community based health promoting organisation, Thorne Harbour Health (formerly The Victorian AIDS Council) aims to: Empower individuals and communities to manage their own health and wellbeing. Be responsive to the changing needs of our communities. Build supportive environments for individuals to adopt and sustain healthy behaviours. Strengthen the capacity of the broader community, including government and service providers to respond to the needs of our communities.
We envision a healthy future for our sex, sexuality & gender diverse communities, a future without HIV — where all people live with dignity and wellbeing. As a community-controlled organisation, we are governed by our members and work for people living with HIV as well as our sex, sexuality & gender diverse communities.
Contact:
Email: enquiries@thorneharbour.org
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