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Welcome to CHI
Cystic fibrosis (CF) is a life-shortening genetic condition. There is no cure!
CF changes the body’s ability to regulate the salt content of cells, causing an abundance of thick mucus to build up in the lungs, digestive system and other organs. This, in turn, can lead to fatal lung disease, malnutrition and a host of other symptoms that can vary hugely from person to person.
There are currently around 10,600 children and adults living with CF in the UK. However, 1 in 25 of us carry the faulty CF gene, often completely unaware. When two carriers have a child, that child has a 1 in 4 chance of having cystic fibrosis.
Life expectancy for a child born with cystic fibrosis today depends on where they are born.
In the UK, the median life expectancy for a child born with CF is 47 years, increasing all the time as new drugs and new treatments develop. However, without specialist centres to educate patients and their carers, the simple everyday measures we now know are so important to prolonging health, are overlooked. And without implementation of basic management techniques, children around the world are missing out on the lives they deserve.
CHI works with specialist multidisciplinary CF teams in the UK, building international medical partnerships and sharing best practice across borders.
Working with specialist CF centres across the UK and pairing these with overseas medical teams, we can build relationships that improve care for children and young adults living with CF. Activities can include specialist visits and exchanges, joint clinics, training or simply a new perspective on rare or complex cases. Further details on what we do can be found under ‘methodology’, or within specific project pages.
Priority is given to low cost, highly effective approaches to CF care that are sustainable within the local environment.
Working collaboratively with the local team we can identify key priorities for each project, ensuring maximum benefit to the CF community within the resources available. This could involve training in physiotherapy, advice on diet, or simply helping to set up an effective database for patient monitoring.
Dr Chris Rolles explains cystic fibrosis and CHI’s bottom-up approach to CF care in this short video.
We need your help to keep changing lives!
All of the specialists we work with give their time and expertise for free. CHI is run and managed by volunteers. Your money will make a genuine impact on the lives of children living with cystic fibrosis. Please donate today!
CHI regrets it cannot help fund the treatment of individual cases. We have very limited resources to sustain our mission to support the efforts of others and to help educate and train. Funding the direct treatment of one individual would deplete these resources and so detract from our mission.