Cystic Fibrosis

Page Updated: 16th April 2021


Reaching Families and Amaze Factsheet

Reaching Families and Amaze have worked in partnership to produce a series of informative material written by parent-carers for parent carers. These include a series of factsheets on specific conditions designed to be used by parent-carers when they receive their child's diagnosis.The information provided will help to gain a better understanding of their child’s condition, alongside the current local support services available.
Please note:

  • The factsheets have been reviewed by NHS clinicians.
  • Parent-carers were involved at all stages of the editorial process

    What is cystic fibrosis?

    Cystic fibrosis (CF) is a genetic condition. It mainly affects the lungs and digestive system, which become clogged with thick mucus. This can make it hard for people with the condition to breathe and to digest food. There is no cure for cystic fibrosis, but the condition can be managed with physiotherapy, exercise, medication and diet. Many people are carriers of the faulty gene for cystic fibrosis. If two carriers have a baby, there is about a 1 in 4 chance that the baby will have the condition. Around 1 in every 2,500 babies born in the UK has cystic fibrosis.

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    Characteristics of Cystic Fibrosis

    Diagnosis

    Types of Therapy

    Support and Advice Services

  • Making Sense of it All – our handy parent/carer guide contains information and advice on benefits, support for your child at school, getting help from social services and accessing social & leisure activities.

  • Children’s Cystic Fibrosis Fund Worthing & Chichester - Supports CF Children up to age 18 yrs and their families that live in Sussex: Contact Jo: 07745 325919, or Charlee: 07886 888302 or Email: [email protected]

  • Cystic Fibrosis Holiday Fund – funds holidays and short breaks for people under 25 years who have cystic fibrosis.

  • Cystic Fibrosis Trust – information and support for people with CF and their families. See website or call their helpline: 0300 373 1000.

  • Disability Living Allowance (DLA) – your child may qualify for DLA, a state benefit that will help with their care.

  • West Sussex Local Offer search for ‘cystic fibrosis’.