Cystic Fibrosis Overview

Cystic fibrosis is an inherited condition which causes mucus build-up in the airways and digestive system, in turn causing breathing difficulties, lung infections and problems absorbing nutrients from food. It is most often diagnosed in newborn babies. The condition tends to worsen over time. One in every 2,500 babies born in the UK has cystic fibrosis.

What are the signs and symptoms of cystic fibrosis?

  • Wheezing when breathing (caused by mucus in the airways)
  • Breathlessness
  • Tight chest
  • Coughing
  • Chest infections
  • Difficulty gaining weight and growing during childhood (caused by mucus in the pancreas which helps process nutrients)
  • Jaundice
  • Diarrhoea or constipation

Related conditions that can develop as a result of cystic fibrosis include:

  • Diabetes
  • Infertility in males
  • Osteoporosis or thinning bones
  • Liver problems

How is cystic fibrosis diagnosed and treated?

Most people will be diagnosed with the condition as a newborn, following a heel prick test blood sample. Analysis of the salt content of the baby’s sweat (high in someone with cystic fibrosis) can confirm a diagnosis, as can a gene test on a saliva sample to identify the faulty gene responsible for the condition.

There is no cure for cystic fibrosis but treatment can improve quality of life for someone with the condition, depending on the extent to which they are experiencing the different associated symptoms.

For example:

  • Antibiotics to treat chest conditions
  • Bronchodilators to widen airways and make breathing easier
  • Medication to thin mucus or reduce the amount of mucus produced by the body
  • High-calorie diet so that the body has a chance to take in sufficient nutrients, alongside extra digestive enzymes to increase the amount of food processed by the digestive system
  • Breathing exercises to clear airways
  • Regular exercise to improve lung health and breathing
  • Lung transplants in severe cases

Most people born with cystic fibrosis nowadays will live beyond the age of 40.

There are a few ways to confirm what sort of reasonable adjustments should be made for an employee with cystic fibrosis:

  • Because the majority of people with cystic fibrosis are diagnosed at birth, employees will likely know they have the condition (this is not always the case, such as with less ‘visible’ disabilities like dyslexia).
  • Even if the employee does not wish to disclose their cystic fibrosis, an employer can focus on making reasonable adjustments, rather than seeking to determine the precise disability their employee has.
  • Given that cystic fibrosis can evolve over time, with certain symptoms worsening as the person ages, it is important to maintain regular communication with the employee who has cystic fibrosis so that the reasonable adjustments remain appropriate.

What reasonable adjustments are possible for employees with cystic fibrosis?

Employers have a legal duty to make reasonable adjustments for employees with cystic fibrosis if they know, are aware of, or could ‘reasonably be expected to know’ that the employee has cystic fibrosis. Most employees will tell their employer what reasonable adjustments they need. They often involve simple changes in the way an employer might usually do things.

If the employee does not disclose a health issue or disability which may affect their performance up front, an employer should broach the subject sensitively if they suspect that there may be a disability behind the employee’s reduced performance. Reasonable adjustments can then be made in accordance with the employee’s needs, including, in the case of cystic fibrosis:

  • Relocating the employee’s workstation for example, allowing the employee to have a private space in the office if they are struggling with coughing and do not wish to be disruptive, etc.
  • Additional breaks to allow the employee to do breathing exercises and use the bathroom if required on a more frequent basis.
  • Time off to attend appointments, receive treatment and to rehabilitate, particularly after a surgical procedure.
  • Adjustments to duties depending on the severity of their symptoms, which may be variable and improve or deteriorate from one week to the next.
  • Raising awareness so that colleagues understand the employee’s cystic fibrosis and can help ensure the employee feels comfortable at work. This is particularly important as the employee with cystic fibrosis may experience regular coughing fits, wheezing and other symptoms that may otherwise draw unwanted attention.

Cystic fibrosis Signposting

Cystic Fibrosis Trust – charity raising awareness and funding for research into cystic fibrosis, as well as working to improve the care that people with the condition receive (0300 373 1000).

Cystic Fibrosis Supporters – charity working towards a cure for cystic fibrosis while supporting those living with the condition and raising awareness through sharing the stories of sufferers (07827 388041).

Other Research Resources

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