World leading experts have joined forces to create a gold standard document to help people living with cystic fibrosis.
Cystic fibrosis is an inherited condition caused by a faulty gene that affects the entry and exit of salt and water in cells. It results in the accumulation of sticky mucus in the lungs and digestive system, leading to a range of challenging symptoms. While there is no cure for cystic fibrosis, a wide range of treatment including physical activity and exercise are recommended to manage the condition. There are approximately 11,000 people living with Cystic Fibrosis in the UK and approximately 100,000 people worldwide.
The 24-statement evidence-driven document is designed to assist health professionals in determining the right activity and exercise plan to suit individual needs of people living with cystic fibrosis.
Co-author, Dr Zoe Saynor from the School of Sport, Health & Exercise Science at the University of Portsmouth, said:
“Although we know that physical activity and exercise can bring many physical and psychosocial benefits to people living with long-term conditions, a number of barriers mean that they are often not available within clinical practice for all.
“Research has shown that there is a lack of confidence and understanding in how to utilise exercise for management of cystic fibrosis. We hope that these resources can provide an easy-to-use method to plug that knowledge gap.”
In 2016, Cystic Fibrosis Trust awarded a £750,000 grant towards the development of a comprehensive strategy that will afford people living with cystic fibrosis an individualised activity and exercise routines. The international, multidisciplinary grant was led by researchers at the University of Exeter.
Professor Craig Williams, lead researcher and Professor of Paediatric Physiology and Health at the University of Exeter, added:
“The promotion of physical activity for people with complex medical conditions is not usual, although evidence shows it to be effective in disease management. This consensus integrates physiological, psychological and social benefits of being physically active to support clinical teams and help people with cystic fibrosis lead a life unlimited.”
The Exeter Activity Unlimited Statement, published in Chronic Respiratory Disease, consists of recommendations and guidelines which are specific to exercise and complement other aspects of disease management. It consists of recommendations and guidelines which are specific to exercise and complement other aspects of disease management.
Zoe Saynor and the University of Portsmouth team are also involved in a number of other research projects focused on physical activity, exercise and health in cystic fibrosis. Last year, they partnered up with ‘superhuman’ athlete, Josh Llewellyn-Jones OBE, who has cystic fibrosis (CF) to help others with the disease.