Our son Oliver was struck down with Acute Necrotising Encephalopathy of Childhood (ANEC) this is a rare brain condition affecting just 150 people across the world. On the 20th February 2016, Oliver was only three and a half years old. He was rushed into Accident and Emergency Department in Oxford because he had a seizure at home. The outcome was a Severe Acquired Brain Injury. Our goals are to raise money to improve Oliver’s quality of life and to help the Children Charities that have helped Oliver and so many other children in the UK.
Encephalitis is a sudden onset inflammation of the brain. Encephalitis with meningitis is known as meningoencephalitis. Symptoms include headache, fever, confusion, drowsiness, and fatigue. A further symptom includes seizures or convulsions, tremors, hallucinations, stroke, and memory problems—has a high mortality rate (up to 30%).
Even with treatment; survivors are often left with severe sequelae. Although the reported incidence of encephalitis varies according to geographical location, population under study and different approaches to case definitions and methodology, up to 6000 people are thought to be affected by the disorder in the UK each year. Up to 500,000 people worldwide.
Acute Necrotizing Encephalopathy is a rare type of brain disease that occurs following viral infections. Typically, influenza is the leading trigger, followed by HSV6 and other viruses such as coxsackie and enteroviruses. ANE usually occurs in early childhood, although adolescent and adult cases have been reported. It has the susceptibility to be recurrent in patients who have specific gene variants. ANE was first proposed by Professor Masashi Mizuguchi in 1995 and has slowly gained more recognition worldwide as cases and research are published. ANE International is an initiative that began in 2016 by parents of children affected by ANE. Our goal has foremost been to support and inform all families who are diagnosed with ANE no matter the patient’s age or nationality. Second to that is our wish to support research any way possible and to spread among the general population & medical communities, knowledge of ANE.
ANE International is a non-profit organization focused on raising awareness of Acute Necrotizing Encephalopathy. ANE International is an initiative that began in 2016 by parents of children affected by ANE. Our goal has foremost been to support and inform all families affected by ANE regardless of age and/or nationality. The hardest part of dealing with a rare disease is the sense of isolation that families feel, we want to break these barriers and bring a community to them in those first days when their world is changing drastically.
ANE International wishes to support research in any way possible and to spread the existing knowledge of ANE among the general population & medical communities.
ANE is a devastating brain disease that occurs following viral infections. Influenza is the leading trigger, followed by HSV-6 and other viruses such as coxsackie and enteroviruses, very rarely ANE may be caused by bacteria.
ANE is found worldwide, affecting previously healthy children. It usually occurs in early childhood although adolescent and adult cases have been reported. ANE has two variations making this disease both non-genetic and genetic. Non-Genetic ANE typically only occurs once where the genetic variation can occur repeatedly. Per Novo cases (new genetic mutation) are also seen with ANE.
Please visit ANE International website
77,000 Deaths Worldwide
Encephalitis In 2013, encephalitis was estimated to have resulted in 77,000 deaths worldwide, down from 92,000 in 1990. When death happens, it is usually because of brain swelling caused by severe inflammation. The brain is wrapped in a bony shell (the skull) and when it swells it pushes downwards onto the brainstem. The brainstem is the part of the brain that controls the vital functions of breathing and circulation. When the brainstem is under this type of a severe pressure it stops to function.
Help Raise Awareness
Initiatives that help to raise awareness about this disorder, which many people have never heard of, such as World Encephalitis Day (Feb 22) organised by The Encephalitis Society, play an important part in drawing attention to the disorder and to continuing research that aims to improve diagnosis and management.
Please visit The Encephalitis Society website