Welcome to CHI
We are a small charity based in Winchester, UK. We work to improve the lives of children and young adults suffering from cystic fibrosis, mainly by supporting improved medical services in state hospitals.
Throughout Central and Eastern Europe doctors treating children with cystic fibrosis struggle to provide good care with limited resources. We identify those who are truly dedicated to improved patient care and support their efforts.
Typically we start with a fact finding visit by a specialist team from a UK CF centre to see how the local service works and identify opportunities for improvement. Very often there is a lack of specialist nurses, physiotherapists and dietitians. We help fill these gaps by providing training in country and funding visits to UK centres to observe modern treatment. We support parents’ and patients’ groups to lobby for better services and to improve home care.
Cystic Fibrosis is caused by a single faulty gene that controls the movement of salt in the body. In Europe 1 in 30 people carry the faulty gene causing CF. If two carriers have a child, the baby has a 1 in 4 chance of having Cystic Fibrosis.
It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Children typically become malnourished, even when well fed, and suffer repeated chest infections.
Average life expectancy in the UK is now well over 30 years but in Central and Eastern Europe many sufferers remain undiagnosed and die in infancy, those that are recognised rarely complete their teenage years.
While expensive antibiotics to control lung infections and even lung transplants have a place in modern care, 80% of the improvement in life expectancy and quality of life is due to the rigorous application of preventative measures.
We focus on the basics of good CF care, as practised in the UK National Health Service:
- Regular monitoring of height and weight with good record keeping and prompt intervention when growth is below target,
- Training parents and children in physiotherapy lung clearance techniques and the importance of using them every day,
- Improved nutrition using readily available foods and pancreatic enzyme replacement therapy,
- Prevention of cross infection, through good patient management,
- Dedicated multi-disciplinary medical teams and facilities as recommended by the ‘European Standards of Care’.
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.