Living with Cystic Fibrosis

Cystic fibrosis (CF) affects people with the condition in a huge range of ways throughout their lives. It’s hard to paint a picture that illustrates the 10,000 different stories of the CF community, but we can provide you with information on the different aspects of life that can be affected by CF below, from new diagnosis to planning for end of life.

New diagnosis
Pre-school and primary school
Secondary school
Leaving school
Family planning
Work
Growing older
Planning for end of life
Cross-infection
Festivals

New diagnosis

Welcoming a new baby to the family is an exciting time, but a diagnosis of cystic fibrosis can feel daunting. We worked with parents who have been through the diagnosis of CF to create a video and new parent pack. We hope it helps answer some of your questions and provides reassurance.

Pre-school and primary school

Starting pre-school or primary school can be an exciting and daunting time for parents, particularly if your child has cystic fibrosis. Whether you're a parent, or a teacher expecting a new student with CF, the information in our primary and pre-school pack is full of useful information and real-life examples of how other people have managed the transition, with top tips for making the journey as smooth as possible. We've even got video interviews parents, teachers and nurses to help you find out what to expect.

Secondary school

Our secondary school guidance includes a pack with loads of useful and interesting information on developing an individual health care plan, managing treatment and infection control, dealing with absence, and an ‘Ask the psychologists’ section, and we even have a magazine for young people! You can also view our information for children who have made friends with a child with CF.

Leaving school

Cystic fibrosis doesn't have to hold you back from following your dream of continuing your studies. People with CF are living longer and healthier lives, and as a result more are attending university or college than ever before. Explore our leaving school booklets for people with CF and their families, and download our booklet for training providers, colleges and universities. We've also created an animation all about how to choose your options after leaving school.

Family planning

If you or your partner have CF, and you’re thinking about having children, you might be grappling with a number of issues. Our family planning booklet contains information to support you in thinking through the issues in relation to you; your health, your life, your hopes and fears.

Work

More people with CF are in employment than ever before. There are some important considerations when you're looking for a job, such as your own safety and what your rights are in terms of disclosing your condition. Find out more and download our employment factsheet.

Growing older

Advances in our understanding of CF mean that there are more effective treatments, so people with the condition are living longer than ever. However, the aging process can bring its own challenges. Explore our information and advice about the associated health, nutrition, fertility, social and emotional issues.

Planning for end of life

Making plans for the end of life can be very difficult, but it’s a good idea for everyone to start thinking about it early on, whether they have health problems or not. Find out more in our resources for end-of-life planning.

Bereavement

Coping with the death of someone close can be one of the hardest things we ever have to deal with, and we all deal with grief in different ways. Our bereavement leaflets will give you some information about grief and coping with the loss of someone with cystic fibrosis, as well as details about organisations that may be able to offer you support.

Cross-infection

Cross-infection, or cross contamination, occurs when one person spreads an infection to another, either directly or indirectly. Find out all about cross-infection and what is done to combat the issue.

Festivals

Music festivals are a rite of passage and having CF shouldn't stop you from having fun and doing what you enjoy. Take a look at our festival planning information for top tips on attending a festival if you have CF, and our advice for parents of young people with CF who are heading off to a festival.

Support available

Whatever you're going through, we have a range of practical and financial support to help lighten the load, as well as a number of resources and publications for you to download.

Find support

CF Insight Survey

Our CF Insight Survey is released every year to help find out what cystic fibrosis means to people with the condition year on year, and to feed into the work of the Trust. Take a look at the most recent results and find out when to expect the next survey.

What is CF?

Cystic fibrosis, or CF, affects the lungs, digestive system and other organs, and there are over 10,600 people living with it in the UK.

Find out more

Get involved

There are so many ways you can join the fight for a life unlimited. Choose from joining or organising an event, supporting one of our campaigns, fundraising, volunteering and much more!

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Our work

We're dedicated to creating a life unlimited. We campaign, fund research, support clinical trials and offer support to everyone affected by the condition.