This week (18-24 June) is CF Week — which raises awareness of Cystic Fibrosis — a genetic illness that affects more than 10,400 people in the UK.
What is Cystic Fibrosis?
Cystic fibrosis (CF) is a genetic illness that is inherited by the child from both parents.
The faulty gene affects the movement of salt and water around the body’s cells. Together with recurring infections this can cause a build-up of sticky mucus in the lungs and digestive systems, causing problems with breathing and the processing and absorption of nutrients, especially fats. People with CF, including babies, often find it hard to put on weight.
How likely or common is CF?
If both parents are carriers of the faulty gene that causes it then there is a 25% chance the child will be born with the illness, and a 50% possibility of the child being a carrier.
It is thought that one in 25 people in the UK is a carrier, and one in 2,500 babies is born with the condition. CF cannot be caught or transmitted from another person who has it.
What are the symptoms of Cystic Fibrosis?
The symptoms of CF are usually apparent in early childhood but, in some cases, may not be diagnosed until adulthood.
Improved screening of new born babies means that, these days, diagnosis tends to happen much sooner rather than later. Parents may find that their baby has a salty coating on their skin or they taste salty when they kiss them – these are both common symptoms of the illness.
Other symptoms include frequent chest infections, coughs and wheezing, diarrhoea and shortness of breath. Patients may be affected by associated conditions such as diabetes or weak bones.
Is there a cure for CF?
Although there is currently no cure for cystic fibrosis there are a number of treatments which make the condition more manageable and which help to prevent complications.
These include the use of antibiotics to thin the mucus and medicines to widen airwaves. There are also therapies and treatments to help clear mucus from the lungs.
New treatments are being developed all the time which are drastically improving the ability of children and adults to manage the illness.
Regular blood and lung function tests, and chest x-rays help doctors to monitor the illness and prescribe the appropriate medication if needed. A specific diet is usually also prescribed.
In the United States and elsewhere, researchers are working on the development of new treatments including an inhaled spray containing normal copies of the CF gene. In short, the normal genes deliver the correct copy of the CF gene into the lungs of CF patients. Other treatments include protein repair therapy, and there are tests being carried out to see whether curcumin (turmeric) may be effective in treating the condition.
Being the parent of a child with CF can be challenging and worrying but there may be local support groups in your area, so you should not feel alone.
The Cystic Fibrosis Trust, or your GP surgery or hospital, will have more information on this. The charity also has dedicated pages of advice and guidance for early years settings and schools to help teachers understand your child’s condition.
For more information visit:
Written by Dorothy Lepowska-Hudson for the Pre-school Learning Alliance