ANE International believes that raising awareness of Acute Necrotizing Encephalopathy will save lives. With initial symptoms being typical of viral illness and many cases being from influenza, many ANE patients are initially turned away from hospital emergency rooms.

In most cases the patient is already showing unusual symptoms which are overlooked.

These may include double vision, unsteadiness of gait, vomiting and extreme lethargy, some are already having seizures which if initially brought under control are put down to febrile seizures.

Some patients are diagnosed with Encephalitis or Meningitis if the symmetrical brain lesions are not recognised.

No genetic testing is done and this puts the patient and their family at risk of further attacks.

Our aim is for all Doctors to look a little deeper for neurological symptoms with a viral illness and be able to recognise the lesions specific to ANE on MRI.

That parents are aware of neurological symptoms and when to take action. Not only may this save the patients life but also other members in the family if ANE is genetic.