Ways to help yourself
Adhering to treatment has been shown to have a massive impact on symptom control.1 Although fitting everything into a busy life when all you want to be is normal can be hard, it’s worth it in the long-run. If you’re struggling to stick with your physio and treatments, trying apps or phone reminders, or setting achievable goals may help you with setting good habits and let you form a routine that you can stick with for years to come.2
People with CF should not meet face-to-face. People with CF are prone to harbouring lung infections which are harmless to those without the condition but can be very harmful to other people with CF. If people with CF encounter one another, they risk passing on these infections to each other. This can occur even if they have the same type of infection (e.g. Pseudomonas aeruginosa or Burkholderia cepacia) as different strains of these bacteria exist. Though it might be tempting to meet up with someone who you can relate to, it is advisable that you don’t meet in person. There are plenty of other ways to keep in contact, though, such as social media.3
From participating in clinical trials of the latest therapies, to starting new treatment and physio regimens that you feel could suit you better, ask your specialist CF team as they will be able to advise you. The best way to treat CF is the way that works best for you.4,5
Don’t be afraid to ask for help when needed – the CF Trust have a range of resources available and your specialist team will also be happy to help where they can.
Having CF can increase the body’s energy needs by 100-200%6
Eating a good diet can help improve overall CF symptoms, as being a healthy weight bolsters the immune system, leaving you more able to fight infections.6 Good, nutritious food will also help you feel fit, happy and motivated. Eating nutrient and calorie-dense foods is an important part of life with CF.
Your CF dietician will be able to talk through any questions or concerns you may have about nutrition and any special requirements you might have because of your CF.5
There is a growing consensus that exercise is crucial aspect of life with CF. Improving cardiovascular fitness and increasing muscle may help by strengthening the lungs and the whole body overall, making you less susceptible to lung infections and feeling great.7
Staying on top of immunisations is crucial for those with CF to help you stay well. Make sure that you have had all of your immunisations and top-ups, and get a flu jab every autumn/winter to help protect you from infections.5
It goes without saying that the damage inflicted by cigarette smoke is particularly harmful to people with CF. If you need help, your specialist team will be able to provide you with support to quit; the HSE also have a range of resources to help you stop smoking.5,8
Approval code: RESP-IE-NP-00061
Date of preparation: November 2020
- Eakin M N et al. J Cyst Fibros. 2011; 10: 258–264. Last accessed: November 2020
- Kettler L J et al. Thorax. 2002; 57: 459–464. Last accessed: November 2020
- Cross-infection. CF Trust. Available at: https://www.cysticfibrosis.org.uk/life-with-cystic-fibrosis/cross-infection Last accessed: November 2020.
- Taking part in Clinical Trials: A guide for people with cystic fibrosis, parents and family members. CF Trust, 2017. Available at: https://www.cysticfibrosis.org.uk/~/media/documents/get-involved/clinical-trials/cystic-fibrosis-trust-clinical-trials-booklet.ashx Last accessed: November 2020
- Standards for the Clinical Care of Children and Adults with cystic fibrosis in the UK. CF Trust, 2011. Available at: https://www.cysticfibrosis.org.uk/~/media/documents/the-work-we-do/care/consensus-docs-with-new-address/cystic-fibrosis-trust-standards-of-care.ashx?la=en Last accessed: November 2020
- Achieving a healthy weight in cystic fibrosis. CF Trust, 2018. Available at: https://www.cysticfibrosis.org.uk/~/media/documents/the-work-we-do/care/resources-for-clinicians/nutrition-leaflets/achieving-a-healthy-weight-in-cf-dec-2018.ashx Last accessed: November 2020
- Physiotherapy treatment in cystic fibrosis: airway clearance techniques. CF Trust. March 2013. Available at: https://www.cysticfibrosis.org.uk/~/media/documents/life-with-cf/publications/factsheets/factsheet-physio-airway-clearance.ashx Last accessed: November 2020
- HSE Quit Smoking Plan. Available at https://www2.hse.ie/quit-smoking/ Last accessed: November 2020