Childhood liver disease is now thought to affect up to one-in-10 children across Europe, as patients and clinicians throughout the continent are coming together for Big Yellow Friday to call for much-needed improvements to public awareness and earlier diagnoses of childhood liver disease to improve the lives of paediatric patients and their families.
Big Yellow Friday, which takes place on 6th March, aims to drive awareness and understanding of, and support those affected by, childhood liver disease. For 2020, clinical experts from the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) and patient representatives from the Children’s Liver Disease Foundation (CLDF) have joined forces to take Big Yellow Friday to the European stage for the very first time.
Research has demonstrated that childhood liver disease is often under-recognised and diagnosed late, as early symptoms are hard to detect, which, if left to develop, can lead to complications that reduce quality of life and can even be life-threatening. The issue of late diagnosis is exacerbated due to very low public awareness of symptoms.
Childhood liver disease is any condition that disrupts the function of the liver in a child. Risk factors include family history, transmission from mother to child and autoimmune conditions. One of the key signs of certain childhood liver diseases is newborn jaundice, while other symptoms such as pale stools, regular pain or swelling in the abdomen, itchy skin, loss of appetite, bleeding or bruising easily and poor growth, can all be indications of childhood liver disease.
ESPGHAN and the Children’s Liver Disease Foundation have released a four-step plan to improve the lives of paediatric liver patients:
- Public awareness and education campaigns should be implemented to improve public understanding of childhood liver disease
- Utilising available funds and grants for rare disease initiatives, greater research should be commissioned to help drive the development of treatments for rare liver conditions
- Children with a liver disease must receive care in a specialist paediatric setting to ensure patients are diagnosed and treated in the most effective way
- Long-term and gradual transitional arrangements from paediatric to adult care must be improved to ensure patients receive the highest quality of care, with as little disruption possible
‘Early management of childhood liver disease to improve growth, treat infections, and prevent bleeding issues will considerably improve the quality of life and outcomes of patients,’ explains Pr. Dominique Debray of the ESPGHAN Hepatology Committee.
‘If diagnosed late, liver disease may have an impact on growth, induce itching, insomnia, bone fractures, multiple vitamin deficiencies, and in some instances, such as cirrhosis, a liver transplantation may be required. To prevent the impact of late diagnoses, early diagnosis should be actively pursued, and once diagnosed, children with chronic liver diseases should be managed in specialised liver centres.’
‘There are many different forms of childhood liver disease and there is so much we have yet to learn about the possible causes,’ added Alison Taylor, Chief Executive of the Children’s Liver Disease Foundation.
‘Raising awareness of these conditions is vital so we are delighted that ESPGHAN is joining in by spreading the word amongst its extensive networks this year. Their support will make a real difference to the many families whose lives are affected by liver disease in their child.’