Young People

Being a young person can be tricky, but being a young person with CF can be even more difficult. We can provide lots of support and information to help you through this time. On this page you will find a range of services and resources about living with CF.

Please get in touch with our Services team via email services@cfwa.org.au or on 08 6224 4100 if you would like to know more about our services and support.

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

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 have a Community Support Worker Program which can help you keep on top of your physio and exercise routines. A CSW will come out to your home to help with physio routines and/or exercise. Contact services@cfwa.org.au for more information.

Sputum Samples

It is important to get a sputum sample to Pathwest 4 times a year. These samples help detect and identify bacteria, viruses and fungi that may be found in your lungs and allows for best treatment. Even if you are on a modulator drug, you may still grow bugs even without having lots of sputum, if any.

Exercise

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.

Exercise Support

• Adult Support Subsidy available to people aged 16+ to assist with the cost of gym membership/personal trainer/sport fees.
• 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

• Beam for CF
• Exercise (CF Physio)

Nutrition

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 page all about Nutrition for Adults with CF.

Medications & Procedures

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:

Procedures

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

Some people will experience some co-morbidities associated with having CF. You might like to read our factsheets for more information on some common co-morbidities:

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.

Hospital Support

CFWA can offer the following hospital support services:

Hospital Travel & Parking Subsidy

For people experiencing financial hardship, we can offer financial assistance for CF related hospital/clinic travel and parking. Click here for more information.

Hospital Visits & Food Bag

We can provide food bags during admissions. Click here to request a bag and someone will be in touch within the next few days. Please note, delivery time will depend on staff availability.

Hospital Transition

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 services team on services@cfwa.org.au.

Transition Support Subsidy

Our transition support subsidy, helps with the cost of attending hospital appointments or admissions by providing $50 per visit, for the first two visits to SCGH. To apply for the Transition Support Subsidy, please click here.

Useful External Resources

• Transition? What’s this got to do with me? (CF QLD)
• Moving to Adult Care (CFStrong)
• What is Transition (PCH)
• Useful Resources for Transition (PCH)
• Useful Tips for Transition (PCH)

Emotional Wellbeing

There may be time where you experience mental health issues. 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.

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 psychosocial team who can meet you somewhere for a coffee or just chat on the phone.

Counselling & Mental Health Gap Funding

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 10 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.

Body Image

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.

Relationships

Disclosure

Sexual Health

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:

Useful External Resources

• What They Don’t Tell You– A young person’s guide to sexual & reproductive health issues in CF (CFQ)
• SPILL is a website made for young people with CF about sexual and reproductive health.
• Sexual Health (CF Foundation)

School & Work

High School

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 on education@cfwa.org.au or 08 6224 4100.

Work

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 psychosocial team on services@cfwa.org.au if you have any questions about working and study.

Useful External Resources

• Employer Information (CFStrong)
• A Guide to CF For Employers (CFNZ)

Travel

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.

Useful External Resources

• Travel Insurance & CF (CFStrong)