Hi Kiah, can you tell us a bit about yourself? Hi, my name is Kiah. I have CF and have just turned 17. I live…
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 senior therapist, social worker, 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.
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.
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.
Community Support Worker Program
We also have a Community Support Worker Program which can help you keep on top of your physio and exercise routines. For more information, contact our physiotherapist, Sam on email@example.com or phone 08 6224 4100
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.
- Adult Support Subsidy available to adults to assist in covering the fees of gym memberships/personal trainers.
- Community Support Workers can assist with goal setting, motivation and assistance with exercise, with a program specifically developed by your hospital care team.
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.
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 firstname.lastname@example.org 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 to help cover the costs associated with travel and parking for hospital and clinic appointments. Click here for more information and to apply.
Sir Charles Gairdner TV Rental Subsidy
To assist those who would like to access TV while in hospital we will be offering a $50 reimbursement subsidy towards the cost of TV rental per SCGH admission. Click here 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.
To talk to someone about transition or to book a transition tour, contact our Social Worker Haylee on email@example.com or 08 6224 4100.
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)
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
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. Haylee can meet you somewhere for a coffee or just chat on the phone. Contact her on firstname.lastname@example.org.
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 funding to assist with any payment not covered by Medicare. For more information, click on the Mental Health Care Plan & Rebates factsheet below.
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.
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.
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 email@example.com.
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.
- Sexual Health (CF Foundation)
School & Work
High School can be a challenge, with or without CF. Our CFSmart Education Program is a resource for teachers to learn more about CF. It has free e-Learning modules which they can complete to better understand your needs at school.
Our Education Officer can also organise to speak to your teachers about CF if further support is required. For more information contact our Education Coordinator Sharon on firstname.lastname@example.org or 08 6224 4100.
You might also be interested in the following resources:
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?
You may be entitled to study allowances and other subsidies. Check out our Financial Support page for more information. You can also speak to our Youth Social Worker via email (email@example.com) or on 08 6224 4100 if you have any questions about working and study.
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.