Starting school is a significant life event for every young child. Like any new experience, being a student can be a bit challenging at the beginning, especially when you need to balance homework, making new friends and managing cystic fibrosis (CF). What is important is to seek appropriate support and to look after your/your child's health:
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Be organised: plan your/your child's day the night before, taking into consideration what books to bring in, but also what food and medication are required. This will help run your/your child's day smoothly, without any last-minute decisions and worries1
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Seek support: the CF team can advise patients and parents/carers on how to best inform your/your child's school about CF, diet, medications, and any other health requirements.1,2 Inform teachers about your/your child's CF either through an appointment or via email if easier. In case of sickness or uncertainty about a school activity, you may want to speak to a teacher or a school nurse for guidance and support
- Speak to extracurricular/PE teachers: when joining a sports team, it is important to keep to your/your child's treatment schedule, even on game days. Talk to your/your child's teachers to devise a plan. This may apply to other extracurricular activities as well, such as Guides and Scouts, theatre and music groups, and school trips
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Speak to the school nurse: if available, consider discussing with your/your child's school nurse or onsite healthcare staff, the particulars of CF in case of emergency, or chatting about potential classroom illnesses and the risk of getting sick
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Speak to friends: anyone living with CF may want to expand their social circle or explore new things. It is the individual person with CF's choice whether they wish to disclose their CF status with any of their friends.1 However, make sure that your/your child's wellbeing comes first, such as not giving in to peer pressure to try food or activities that make you/your child uncomfortable. Do not neglect your/your child's diet and treatment schedule. If in doubt, speak to a trusted adult person about your concerns.
Life after school
Planning for life after school is a great opportunity to shape your future path, such as further studies at college or university, apprenticeships, traineeships, vocational qualifications, working, volunteering or travelling.3 Whatever path you choose, it needs to fit your lifestyle; the following points can help you with your decision:
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Explore your options: speak to family, friends, teachers, mentors or careers advisors about your thoughts, inhibitions, interests or worries. They may be able to offer useful advice and clarity on your different choices. Use the internet to gather information on different career paths or studies, attend careers and university/college fairs, or try an online career test to help you evaluate some of the options
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Be mindful of your health: whatever your options are, factor in your
- CF, diet and general wellbeing.4 Speak to your CF team about your options, so you can assess the pros and cons of different study or career paths together and maintain balance between your chosen path and your healthcare routine. If you are thinking about travelling, ask about healthcare support in other countries, medication availability and health insurance3
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Look for financial aid: there may be financial support available for people with CF and their families. Please speak to your CF team or Citizens Advice about any financial aid you may be entitled to.5
Further education away from home
Further studies can be exciting and offer lots of opportunities for expanding both your knowledge and your social circle. Here are a few tips to help you navigate through your education and finances while also managing your CF, especially if you are away from home:
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Seek support: to make the transition as smooth as possible, coordinate with your CF team on how to best inform your new GP and your college/university’s health centre about your diagnosis, as well as the support and medication you require.2 Check what additional services and assistance may be available for people with conditions such as CF
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Look after your nutrition: ensure you have enough information and support from your CF team to maintain a balanced and healthy diet.4 Gather tips on budgeting and learn some recipes that will be easy to cook during your studies.4,6 With a little bit of planning, you will manage your own diet and medication regimen
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Balance your social life: it is important to build a network of friends and peers for social outings, studying and moral support. A social support network may help both your physical and mental health.7 It is your choice whether you disclose your CF status to your friends. However, make sure that your wellbeing comes first
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Search for suitable accommodation: you may want to inform your college/university of your CF and any health requirements when looking for student accommodation; consider the following factors when choosing where to live: catered (easy meals) vs non-catered (more control over your diet), easy accessibility (ground floor, lift, parking), private room and/or bathroom, easy access to a fridge for food/medication storage.3
Don't let CF stop you from what you really want to do!
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Cystic Fibrosis Trust 2017. Magazine Secondary School Pack. Available at: https://www.cysticfibrosis.org.uk/sites/default/files/2020-12/Magazine%20%20Secondary%20School%20Pack.pdf. Accessed January 2023.
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OSF Children’s Hospital 2022. Cystic Fibrosis at School. Available at: https://www.osfhealthcare.org/childrens/services/pulmonology/cystic-fibrosis/school/. Accessed January 2023.
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Cystic Fibrosis Trust 2018. Leaving school booklet for young people. Available at: https://www.cysticfibrosis.org.uk/sites/default/files/2020-12/Leaving%20school%20booklet%20for%20young%20people.pdf. Accessed January 2023.
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Cystic Fibrosis Trust 2018. Leaving home and eating well with CF. Available at: https://www.cysticfibrosis.org.uk/sites/default/files/2020-12/Leaving%20home%20and%20eating%20well%20with%20CF%20Jun%202018.pdf. Accessed January 2023.
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Citizens Advice 2022. Benefits. Available at: www.citizensadvice.org.uk/benefits/. Accessed January 2023.
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Cystic Fibrosis Trust. Financial support and budgeting at university. Available at: https://www.cysticfibrosis.org.uk/the-work-we-do/support-available/financial-support/university-support. Accessed January 2023.
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Flewelling KD et al. J Cyst Fibros 2019;18:572–576.
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If you have any questions about the content on this site please speak to a member of your CF care team.