1st International #ANEawareness Day
31st July 2018
Join Us and help us to Raise Awareness of
Acute Necrotizing Encephalopathy
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.
If no genetic testing is done and this will put 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. Early treatment is crucial in slowing brain inflammation and hence damage.
Take Action Today By :-
Sharing our Awareness Day Flyer on Social Media
Using our Profile Picture Frame
View our Website, read our stories and become familiar with ANE
*ANE can be both genetic and non genetic. Genetic cases are susceptible to recurrence.
*It is a severe & rapidly progressive acute disease.
*It particularly affects previously well children.
*Typical viral symptoms (fever cough etc) rapidly progress to neurological signs including seizure & coma.
*Bi Lateral thalamic lesions are a distinctive feature on MRI
*Outcomes can include severe cognitive dysfunction, cerebral palsy, vision and speech issues.
*Mortality is high and almost all survivors are left with Acquired Brain Injury
*The exact pathogenesis is unknown.
*It is a highly under recognised Rare disease that is often misdiagnosed.
On this site you will find our awareness campaign, which uses a variety of media to educate and raise awareness of Acute Necrotizing Encephalopathy. We invite you to visit www.aneinternational.org, should you want to find out more about this ultra rare disease.