We share some stories from WA members on the life-changing effects of the new modulator treatments. Jackie shared her story with us in early 2020…
Being a young person can be tricky, but being a young person with cystic fibrosis (CF) can be even more difficult. We can provide lots of support and information to help you through this time. We have a social worker, community nurse, physiotherapist and education officer who can all offer support, as well as a range of resources and services you can access.
On this page you will find a range of resources and information about living with CF.
To read stories from other young people living with CF, click here.
Managing Your CF
Now that you are getting older, it is a natural progression that you will start taking more responsibility of your treatments. Airway clearance, exercise, nutrition and medications will all remain vital aspects of CF management and adherence to your treatment plan is so important to maintain your best health possible.
In this film “Living with CF: Being a Teenager” produced by Cystic Fibrosis Community Care, we hear the experiences of two young people living with CF.
Airway clearance, or physio, is required every day to remove mucus from your lungs to prevent lung damage. It is important to have a good routine with your physio and to understand why you need to do it.
There are lots of different airway clearance techniques, and your hospital physio will create an individualised program that is best for you.
You should always speak to your hospital physio if you have any questions about your physio treatment. We also have a Community Support Worker service which can help you keep on top of your physio and exercise routines. See our Support Programs page for more information.
For more articles and member stories on airway clearance and routines, click here.
Exercise is very important for people with CF. It can improve your lung function, strength, fitness levels and overall quality of life.
Our CFFit resources can assist you to exercise safely at home or in the gym. The resources are also useful to educate your personal trainer or fitness coach about CF and exercise. They contain CF specific exercise tips and information to help you. Hard copies of these resources are available on request. Contact email@example.com.
- Personal Training (PT) Program to assist with goal setting and exercise motivation. This service is available in the southern suburbs for anyone over the age of 16 with CF, and can be accessed by referral from your CF team or by contacting us directly. We have plans to expand the program to cover more areas in the future. Contact our physio Sam on firstname.lastname@example.org or 08 6224 4100 for more information.
- Adult Activity Subsidy available to adults to assist in covering the fees of gym memberships/personal trainers. Go to Subsidies and Equipment for more information.
For more articles and member stories on exercise and fitness, click here.
Useful External Resources:
What you eat plays a big role in the management of your CF. Body weight can be linked to lung function and overall health.
We have a new webpage all about nutrition for adults with CF. Click the banner below for more information.
Our CFFood booklet also has more information about the CF diet for young people.
For more articles and member stories on nutrition, click here.
Useful External Resources:
- Eating Healthy as a Teenager with CF (CF Foundation)
Medications & Procedures
Having CF means you will be on lots of different medications. Common medications include enzymes, bronchodilators, mucolytics, antibiotics, anti-inflammatories, salt and vitamins. These medications may be taken orally, intravenously, inhaled through a nebuliser or other inhalation devices. It can be overwhelming at times, and difficult to stay on top of the required treatments.
Check out our factsheets for more information:
There may be times where you also need to undergo certain procedures.
We have the following factsheets available on some common procedures:
Co-Morbidities & Complications
Many people will experience a range of co-morbidities associated with having CF. These may include Cystic Fibrosis Related Diabetes (CFRD), incontinence, bone weakness and more. You might like to read our factsheets for more information:
Infection Prevention & Control
People with CF are at greater risk of getting lung infections than those who don’t have CF. That’s because the thick, sticky mucus builds up in the lungs, making a perfect environment for germs to breed. Good hand hygiene, avoiding people who are unwell and avoiding others with CF can help minimise the chance of picking up germs.
See our factsheets for detailed information about how germs can affect those with CF and how to minimise risk.
CFWA can offer the following hospital support services:
Hospital Visits & Food Bag
CFWA can provide inpatient visits during an admission to offer support and discuss services. Contact email@example.com to request a visit.
We can also provide food bags during admissions. To request a bag, click here and select the food items you wish.
Hospital Travel & Parking Subsidy
We can offer financial assistance for regional members to help cover the costs associated with travel and parking for hospital and clinic appointments. Click here for more information and to apply.
Transition is the process of moving your care from Perth Children’s Hospital (PCH) to Sir Charles Gairdner Hospital (SCGH). The time at which you transition is a group decision made by you, your family and your medical team. It usually happens at 18 years of age, however it might happen earlier or later, depending on how ready you are. We can help you through the process by taking you on a tour of SCGH to see the ward and meet with the CF care team. Transition can be an anxious time, so being prepared and understanding of the process can really help.
This film “Transition to Adult Care” by Cystic Fibrosis Community Care, shares young people’s perspectives on their transition experience.
Useful External Resources:
- What is Transition (PCH)
- Useful Resources for Transition (PCH)
- Useful Tips for Transition (PCH)
- Saying Goodbye to Paediatric CF Care and Hello to Adult CF Care (CFF Blog)
To talk to someone about transition or to book a transition tour, contact our Community Nurse Sharon on firstname.lastname@example.org or 08 6224 4100.
Anxiety & Depression
Young people with CF are at greater risk of experiencing mental health issues, including anxiety and depression, due to the ups and downs of living with a chronic illness. Triggers can include new issues (diabetes, continence issues etc), changes in your health, difficulty maintaining normal activities such as work or relationships, poor body image or lung transplantation. Anxiety and depression can affect how you manage and cope with CF, so it is important to look after your mental health and seek help when you need it.
Counselling & Mental Health Gap Funding
Our youth social worker, Haylee, is available to provide counselling and general support. She can meet you somewhere for a coffee or just chat on the phone. Contact Haylee on email@example.com.
If you wish to access more formal support, a Mental Health Care Plan can be accessed through your GP which will entitle you to access up to 20 Medicare subsidised sessions with a mental health professional each calendar year. We offer a Mental Health Gap subsidy to assist with any payment not covered by Medicare. For more information, click on the Mental Health Care Plan & Rebates factsheet below.
For more articles and member stories on mental health and wellbeing, click here.
Many people with CF experience fatigue from time to time. Fatigue is different than just feeling tired, and generally it’s not something that can be fixed with an early night or by resting for a little while. You may have heard of #spoonie. Spoon Theory is a simple metaphor for explaining what it’s like living with a chronic illness.
Motivation & Goal Setting
Staying motivated to complete your treatments can be difficult. Goal setting can be a great tool to help stay focussed and keep on top of all your nebs and medications.
Motivation: In this episode of CF Talk, our participants share their tips for staying motivated to keep up their treatment and exercise routines.
It’s common for young people with CF to experience body image issues because of the impact CF can have on your body. Body weight, bloating, coughing, incontinence, ports, PICCs, PEGs and scarring, are common issues for people with CF.
Embarrassing Moments: In this episode of CF Talk, our participants share some of the less discussed and potentially embarrassing side effects of life with CF.
You might also be interested in checking out Salty Girls. Salty Girls is a collection of real life stories from young women living with CF. In the book, the ‘Salty Girls’ share their personal stories about living with CF and strive to embrace their bodies, scars and all, to inspire women everywhere to do the same.
It is important to know that many young people experience these feelings and that there is always someone to talk to. You might be interested in speaking to our social worker, or connecting up with an older adult with CF via our e-mentoring program. See Counselling and Support for more information.
To facilitate connection among young people living with CF, we have created a CFWA Youth Instagram page. The account provides a space for young people with CF to connect and share in each other’s journeys. Head over to Instagram @CFWAyouth and give us a follow! If you have any questions or ideas for Instagram, please contact Haylee, our youth social worker via email firstname.lastname@example.org.
Relationships: In this video, our participants share how they’ve grown and maintained relationships with family, friends and partners while managing life with CF.
Disclosing CF: In this video, participants discuss who they tell about CF and how.
Many young people with CF have lots of questions about sexual health, including puberty, fertility and sex. There are some great resources that may answer any questions you have.
These factsheets are all about fertility, reproduction and CF:
You might also like to read these external resources:
- SPILL is a website made for young people with CF about sexual and reproductive health.
- What They Don’t Tell You- A Young Person’s Guide to Sexual and Reproductive Health Issues in Cystic Fibrosis (CF Foundation)
For more articles and member stories on fertility and sexual health, click here.
School & Work
High School can be a challenge, with or without CF. We have a program called CFSmart which has a range of information for you, your teachers and your parents, all about managing CF at school. You might be interested in:
Go to the CFSmart website for a huge range of other resources including a student health plan, school camp checklist and CF information for your teachers.
Our Education Officer can also organise a visit to your school to speak to your teachers and/or classmates about CF. For more information, go to School and Community Education or contact our Education Coordinator Maggie on email@example.com or 08 6224 4100.
School Experiences: In this episode of CF Talk, our participants discuss their school experiences; sharing ideas about how they navigated the challenges of gaining their education and managing CF at the same time.
For more articles and member stories on school, click here.
In most cases CF should not limit your job choices; focus on what you can do, not what you can’t. When you apply for a job there are a few things to consider including:
- Is the working environment suitable for you and your symptoms?
- Are there flexible working arrangements that might make it easier to attend CF clinic appointments, etc?
- Is the physical environment suitable? e.g. is there dust or bad air quality?
- Are you able to travel there easily from home or clinic/hospital?
Careers and Future Planning: In this episode of CF Talk, our participants share how they’ve juggled work, building a career and aspirations and future planning.
You may be entitled to study allowances and other subsidies. Check out our Subsidies and Equipment page for more information. You can also speak to our Youth Social Worker via email (firstname.lastname@example.org) or on 08 6224 4100 if you have any questions about working and study.
To read more articles and member stories on study and work with CF, click here.
Useful External Resources:
Travel is a great part of life; however, it can take lots of planning and for those with CF, it can involve extra organisation to ensure the trip goes smoothly. Hear from some CF adults about how they plan for travel and how having CF doesn’t stop them.
Have a read of our factsheet for more information on reciprocal health care agreements, travel insurance, health preparation, medications, flights, eating, drinking and cross-infection and links to useful resources.
For more articles and member stories on travel, click here.
Useful External Resources: