Young People

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.

We can provide lots of support and information to help you through this time. 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.

Clinic & Hospital

Having CF means spending time at clinic appointments and, at times, hospital admissions. Juggling this alongside school, work, study and social life can be tough, but support is available. CFWA can offer the following supports:

Travel & Parking Subsidy

For people experiencing financial hardship, we can provide up to 8 subsidy payments per annum for CF related hospital and clinic travel and parking. We offer $25 for people who live in the Perth metro or outer metro area, and up to $100 for regional patients. Click here for more information.

Hospital Bag & Visit

We can provide a Hospital Bag during your admission. Submit a request form at the link below and let us know the types of items you would like e.g. food, drink, activity. You can also request a visit from a CFWA team member to discuss services and how we can support you. Click here to request a bag and someone will be in touch within the next few days. 

Data & TV

If you’re an inpatient at SCGH, you may be eligible for a free SIM card. Each SIM includes:

• 20+GB of data every month
• Unlimited calls and texts
• Valid for 12 months from activation
• They can be used in phones, tablets, laptops (via dongles), or any device that accepts a SIM card

You will need to bring your own device to hospital with you in order to use the sim card. You can request a SIM through the link above.

If you need to hire TV, you can be reimbursed via the Adult Support Subsidy.

Hospital Transition

Transition is the process of moving your care from Perth Children’s Hospital (PCH) to Sir Charles Gairdner Hospital (SCGH). It usually happens at 18 years of age, however it might happen earlier or slightly later.

CFWA Transition Support

CFWA can assist with the process by offering a range of information and support to both you and your parents/carers.

• Online hospital transition workshop
• Transition support subisdy
• Transition support pack
• Resources & information

 Read more here.

Mental Health

There may be times where you experience mental health challenges. Our psychosocial team can offer one-on-one support sessions designed around what’s going on in your life right now. 

CFWA Mental Health Support

Support might include managing stress, anxiety or overwhelm, building confidence and coping strategies, talking through worries or difficult situations, setting goals, navigating life changes, referral to further support or simply having someone to chat with who understands the impact CF can have on daily life. We can also explore practical tools and resources, such as journalling, mindfulness and other strategies to support your wellbeing. 

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. You can access mental health gap funding through the Adult Support Subsidy to assist with any payment not covered by Medicare. For more information, click on the Mental Health Care Plan & Rebates factsheet below.

CF Young Adult Connect

CF Young Adult (CFYA) Connect is an online program for young people with CF aged 17–25. It’s a chance to connect with others who get what life with CF is like, build new friendships, and feel part of a supportive community.

Each session covers topics that matter to young adults, with a mix of practical workshops and wellbeing activities. Topics may include fitness and movement, mental health and wellbeing, navigating adult CF care, career coaching, managing money, and building confidence for whatever comes next. Check out upcoming sessions here.

School & Further Education

Managing CF during high school or further education (university/tafe or other training) can come with extra challenges when also managing CF. With the right support, it’s possible to stay on top of your health. We can support you by helping educators and staff understand CF and possible implications on your study, providing an Individual Student Action Plan and offering practical advice to help you balance your health, studies and future goals.

Tutoring Support

If you are falling behind due to health challenges, tutoring is also available for free through Ronald McDonald Learning Program and other financial support may also be available through scholarships or subsidies. More information can be found here.

Employment

Entering the workforce for the first time can be overwhelming as you navigate writing a resume, applying for jobs and sitting an interview. Considering your CF needs is also important if you are planning to work, particularly if you are still at school or university/tafe and looking for a job that fits in with your study and homework routine. We have more information on getting a job, writing a resume, disclosure and more here.

You may also be entitled to study allowances and other subsidies. Check out our Financial Support page for more information.

Career Coaching

We can offer people with CF aged 16+ access to one-on-one career coaching with a qualified professional.

Career coaching provides a relaxed and supportive space to explore your strengths, interests and goals, while building confidence for your next steps. Sessions can help with practical skills such as goal setting, resume writing, discussions around disclosure and interview preparation.

Through personalised coaching, you’ll gain greater clarity about your career direction and develop practical tools to help you navigate your employment journey with confidence.

Lifestyle

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.

Friendships

Living with CF can sometimes make friendships feel harder, especially when illness, hospital stays, treatment routines, or fatigue mean you miss school, work, or social events. It can feel like friends have moved on, shared experiences happened without you, or people don’t fully understand what you’re dealing with, particularly when CF isn’t obvious on the outside.

For some, this can affect confidence and make social situations feel awkward or unfamiliar. The good news is that these experiences don’t define your ability to make friends or belong. More information and tips for managing friendships here.

Alcohol & Smoking/Vaping

Smoking and vaping can have a drastic effect on the lung health of people with CF, and while alcohol can be enjoyed in moderation (for those over 18), it should always be managed carefully with your CF team. Read more below.

Sexual Health

Many young people with CF have questions about sexual health, including puberty, relationships, fertility, contraception and sex. It’s completely normal to be curious about these topics, and you’re not alone. Understanding your sexual and reproductive health is an important part of growing up and becoming more independent. Having the right information can help you make informed decisions and feel more confident navigating these areas of life.

Puberty

Most young people with CF go through puberty in a similar way to their peers, although it can sometimes happen later, particularly if nutrition, BMI or lung function have been affected.

Relationships

Having CF does not stop you from having relationships, dating or intimacy. Like all young people, you may have questions about attraction, relationships and sexual experiences as you get older.

Fertility

CF can affect fertility, particularly for males, but many people with CF can still become parents. Understanding your fertility, contraception options and family planning choices is an important part of growing up.

Contraception

Protecting yourself and your partner from unplanned pregnancy and sexually transmitted infections (STIs) is important. Learning about contraception, condoms and safe sex helps you make informed decisions about your sexual health.

This information and much more is available in What They Don’t Tell You- A young person’s guide to sexual and reproductive health issues in CF. You can order direct from the link, or we have copies in the CFWA office we can post to you on request.

Airway Clearance

Airway clearance is needed every day to remove mucus from your lungs to prevent lung damage. There are lots of different airway clearance techniques, and your hospital physio will create a program that is best for you. You should always speak to your hospital physio if you have any questions about your physio treatment.

Exercise is also a very important part of airway clearance. It can improve your lung function, strength, fitness levels and overall quality of life.

Treatment Motivation

Life can get busy. Between study, work, friends, and everything else going on, it’s normal for motivation to come and go. Some days, treatments can feel like just another thing on your to-do list.

But sticking with your airway clearance routine remains an important part of looking after your health, even if you’re on a modulator. Keeping up with your routine can help protect your lung health over time. It also helps you recognise when something has changed, making it easier to spot early signs that you might be getting unwell and take action sooner. Read more about building a routine, and tips here.

Airway Clearance Support 

• Community Support Workers can assist with goal setting, motivation and assistance with both airway clearance and/or exercise.
• Family Support Subsidy available to teens with CF up to 15 years of age to assist with sporting and exercise fees or physio and exercise equipment.
• Adult Support Subsidy available to people with CF aged 16+ to assist with the sporting and exercise fees or physio and exercise equipment.

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 and CF with information on weight maintenance, food, modulators, exercise and more.

Body Image

New CFTR modulators have helped many people with CF feel healthier, stronger and more energetic. As your body changes, you may notice differences in your weight, muscle mass or appearance. These changes can bring mixed emotions, and it can take time to adjust. Remember, healthy bodies come in all shapes and sizes, and support is available if you’re finding these changes challenging. More information and resources here.

Medications

Common medications you might take include modulators, enzymes, bronchodilators, mucolytics, antibiotics, anti-inflammatories, salt and vitamins. These medications may be taken orally, intravenously, inhaled through a nebuliser or other inhalation devices. 

Modulators

Starting new medications, especially modulators or long-term treatments, can bring life-changing adjustments. New medications often come with new routines, side effects, and emotional ups and downs. It can take time to find a rhythm that feels sustainable, especially when your health and lifestyle are changing too. Read more about creating a routine and useful health tracker apps. 

Procedures

There may be times where you also need to undergo certain procedures. We have the following factsheets available on some common procedures:

Infection Prevention

People with CF are more vulnerable to lung infections because the thick, sticky mucus in the lungs can trap germs and make it easier for infections to develop. While avoiding germs completely isn’t possible, there are simple steps you can take to reduce your risk. These include practising good hand hygiene, avoiding close contact with people who are unwell, and keeping a safe distance from other people with CF.

Understanding how to protect yourself is an important part of staying well with CF. Check out our factsheets for practical tips and detailed information on infection prevention and reducing your risk of illness.

Comorbidities

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