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Cystic Fibrosis Adult Service NHS Lothian | Our Services

What is Cystic Fibrosis?

Cystic fibrosis is one of the most common life-threatening genetic disorders in the UK. One in twenty-five healthy people also carry a copy of the abnormal gene, though only those with two abnormal copies will show the clinical features of CF.

Cystic fibrosis primarily affects the lungs, with repeated chest infections and breathlessness, but also has important effects on nutrition, diabetes, bones and joints. There is a wide variation in how severely individual patients are affected. Many patients can lead almost normal lives, whilst others are more severely affected, and each week in the UK three young lives are lost to CF. Input of care is required from a range of different specialists as many organs can be affected by Cystic fibrosis.

How cystic fibrosis is inherited

To be born with cystic fibrosis, a child has to inherit a copy of the faulty gene from both of their parents.

This can happen if the parents are “carriers” of the faulty gene, which means they don’t have cystic fibrosis themselves.

It’s estimated around 1 in every 25 people in the UK are carriers of cystic fibrosis.

If both parents are carriers, there’s a:

  • 1 in 4 chance their child won’t inherit any faulty genes and won’t have cystic fibrosis or be able to pass it on
  • 1 in 2 chance their child will inherit a faulty gene from one parent and be a carrier
  • 1 in 4 chance their child will inherit the faulty gene from both parents and have cystic fibrosis

If one parent has cystic fibrosis and the other is a carrier, there’s a:

  • 1 in 2 chance their child will be a carrier
  • 1 in 2 chance their child will have cystic fibrosis

 For more information about Cystic Fibrosis please visit the Cystic Fibrosis Trust website at www.cftrust.org.uk