Cystic fibrosis came to prominent public attention recently when it was revealed by Chancellor Gordon Brown that his four-month-old son James Fraser had been diagnosed with the hereditary disease. He said that he and his wife Sarah were positive about their son's future and optimistic about new treatments, and they were touched by the many messages of support received.
Cystic fibrosis (CF) affects more than 7,500 babies, children and adults in the UK, making it the country's most common life-threatening, inherited condition. Each week five babies are born with CF, which causes mucus to build up and clog vital organs such as the lungs and the digestive system, making it difficult for the sufferer to breathe and digest food properly.
This can cause malnutrition, poor growth, physical weakness and delayed puberty.
CF occurs when both parents are carriers of a faulty gene which is present in one in 25 people. One in four children who have inherited the genes will develop the condition. Their average life expectancy is 31 years.
The most noticeable feature of the condition is a persistent cough.
Sufferers may fall ill with repeated chest infections, and one third of children affected experience asthmatic wheezing at times.
Treatments for CF typically involve a mixture of drug therapies, frequent physiotherapy and enzyme replacement capsules to help the body break down food. Antibiotics may be taken to prevent or treat lung infections, and a low fat, high calorie diet can help relieve some symptoms. People with CF must also take regular exercise to aid their lungs and build strength.
The Cystic Fibrosis Trust advises that the best way to help children with CF at school or nursery is to treat them as individuals and be sensitive to their needs. Children with CF are just as academically able as their classmates, but they may miss some schooling and need extra help to catch up with the rest of the class.
Parents may be anxious about leaving their CF child in daycare and should have the opportunity to discuss the child's needs with staff beforehand. A child may also have a specialist CF nurse who can come in to explain the disease and any special procedures. Staff may have to give a child enzyme capsules if they are eating or drinking, so they should consult the child's GP or their union for guidance on administering medicines.
Although there is no known cure for CF, the faulty gene which causes it has been identified and scientists are trying to develop a technique for replacing or repairing it. Families such as Gordon Brown's have reason to be optimistic. The Cystic Fibrosis Trust says, 'Treatments are infinitely better than they used to be, and with current research there is every expectation that there will be considerable improvements in the care of those with CF in the not too distant future.' NW
* Cystic Fibrosis Trust, 020 8464 7211, www.cftrust.org.uk
Case study: Ruby
Laura Moorhouse's daughter Ruby is 16 months old and has CF. Ruby is cared for by her childminder Kerry two days a week.
Laura says, 'Kerry has been looking after Ruby since she was ten months old. Before I met Kerry she researched CF, which I found reassuring. I gave her some additional information from the Cystic Fibrosis Trust website, and a respiratory nurse from the local hospital visited Kerry to run through what special procedures she would have to follow with Ruby.
'Looking after Ruby is no more demanding than looking after any other child. All Kerry has to do is give Ruby supplements containing creon before food, which help her absorb fat and put weight on.
'Kerry may also have to give Ruby antibiotics, but she might have to do this at some point for any child. So far Kerry has only had to give Ruby antibiotics once, but some children with CF may need them more frequently.
'Some children with CF may need physiotherapy while they are in daycare.
Ruby has physiotherapy twice a day at the moment, but I do this for her.
'Ruby loves going to Kerry's and Kerry has never had to call me with any issues. She looks after other children without CF at the same time and this has never caused any problems. I can tell that Ruby is well cared for. Her health has been very good and she has hardly caught any infections.'