Jenny Agutter: Actress on the 'threatening' condition she carried the 'mutated gene' for

In addition to recurring chest infections, other symptoms of CF can include the following:

  • Wheezing, coughing, shortness of breath and damage to the airways (bronchiectasis)
  • Difficulty putting on weight and growing
  • Yellowing of the skin and the whites of the eyes (jaundice)
  • Diarrhoea, constipation, or large, smelly poo
  • A bowel obstruction in newborn babies (meconium ileus) – surgery may be needed.

Agutter herself decided to have herself tested for CF when she became pregnant with her son 20 years ago. The test revealed that, like her brother, she was also a carrier of a faulty version of the CF transmembrane conductance regulator gene (CFTR), which causes the condition.

Luckily her husband did not carry the same mutated gene, meaning that their children were not at risk as it takes two people with the one single gene to create this problem with CF. However, this did not mean that the run of CF in her family would stop as after Rachel’s diagnosis, Agutter’s great-nephew, Albie was also diagnosed.

Due to this Agutter became actively involved in her role as a patron and trustee of the Cystic Fibrosis Trust and remains optimistic for a better future for both sufferers and their families. She commented: “The Cystic Fibrosis Trust’s work is vital, providing life changing world class research, day to day care and support as well as campaigning for life saving drugs for all.

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