World Encephalitis Day 2019

Did you know?

Autoimmune encephalitis (AE) is a newly discovered disease in which the body’s immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain. This inflammation causes various neurologic and/or psychiatric symptoms and makes the brain not function as it should.

There are no specific symptoms that alone make the diagnosis of AE. The hallmark of AE is the rapid onset of a combination of distinct symptoms, such as:

Decreased level of consciousness, seizures, psychosis, severe anxiety, distorted vision, loss of balance, involuntary movements, vision changes, weakness or numbness of part of the body, loss of language, memory difficulties, loss of inhibition, insomnia, cognitive impairment, paranoid thoughts, and hallucinations.

More about AE

  • AE targets children and aduts of all ages. Each year 4,000 people are diagnosed with AE in the US and 90,000 people worldwide. Experts believe this number to be an underestimate due misdiagnosis or no diagnosis at all for many.
  • AE is hard to diagnose. Different symptoms may appear at different times and at different levels of intensity making this disease to mimic other (psychiatric) disorders.
  • Early diagnosis and aggressive treatment greatly improves outcomes. Delayed diagnosis and treatment can lead to permanent brain injury and loss of life.
  • Testing is required for signs of inflammation and auto-antibody production: brain imaging MRI, spinal tap, EEG and blood work.
  • AE patients may benefit from treatment by a team of physicians that may include neurologists, rheumatologists,psychiatrists, immunologists and others.

Raise AE awareness

We’ve created an infographic to make it easy to spread AE awareness. Download a printable PDF to hand out to neighbors and coworkers, or download a graphic to share on social media!

Download Printable PDF

Download Graphic to Share on Social Media

WED 2019 News & Updates

Lisa shares her journey with Autoimmune Encephalitis February 20, 2019

  I was diagnosed with LGI1 Autoimmune Encephalitis (AE) in February 2018. Encephalitis is a devastating brain disease that affects about 500,000 people worldwide.  The type that I have is called LGI1 Autoimmune Encephalitis – it is extremely rare and known to affect about 0.83 people in a million. With… Read more

AE Insight with Dr. Anusha Yeshokumar February 19, 2019

I am an autoimmune neurologist at the Icahn School of Medicine at Mount Sinai in New York City who cares for children and adults with encephalitis. My interest in this field stems from the first patient I saw on my first day of neurology training. He was a three-year-old boy… Read more

AE Insight with Dr. Sarosh Irani February 17, 2019

For World Encephalitis Day 2019, Dr. Irani talks about his work and research and how he sees the field of AE evolving. Dr. Sarosh Irani is an Associate Professor, Honorary Consultant Neurologist and Wellcome Trust Intermediate Fellow with clinical and laboratory interests in the field of autoantibody-mediated diseases of the… Read more

Emily Gavigan AE Story February 14, 2019

It was almost exactly ten years ago that I rushed home from a coffee shop, paranoid and terrified, and my journey with autoimmune encephalitis began. A college sophomore, I ended up in the ER and then a psychiatric ward, eventually “diagnosed” with Psychosis: Unknown. There have been a lot of… Read more

AE Insight with Dr. Eyal Muscal February 12, 2019

For World Encephalitis Day 2019, Dr. Muscal talks about his work and research and how he sees the field of AE evolving. Dr. Eyal Muscal is a pediatric rheumatologist at Texas Children’s Hospital with a MS Degree in Clinical Research whose activities include patient care, fellowship education, quality improvement, and clinical… Read more

AE Insight with Dr. William Gallentine February 10, 2019

For World Encephalitis Day 2019, Dr. Gallentine talks about his work and research and how he sees the field of AE evolving. Dr. William Gallentine is a pediatric neuroligst at Stanford University in Palo Alto CA. His research interests focus on the role of inflammation and genetics in the development of… Read more

Tori Calaunan AE Story February 7, 2019

My name is Tori Calaunan and I was diagnosed with anti-NMDA receptor encephalitis in the summer of 2018. Before that time, I was a perfectly healthy 24-year-old. I was going through life, had a job that I loved and was in nursing school. In April 2018 I was feeling a… Read more

Raising Awareness for Autoimmune Encephalitis #WED2019 February 5, 2019

Seventeen days till World Encephalitis Day. Let’s all raise awareness for Autoimmune Encephalitis, because it is still too often people with AE go undiagnosed or misdiagnosed. The AE Alliance has created an infographic to make it easy to spread AE awareness. You can print it and hand it out to… Read more

World Encephalitis Day January 17, 2019

World Encephalitis Day is the global awareness day for people who have been directly or indirectly affected by encephalitis. Founded by The Encephalitis Society in the UK in 2014, it is held on February 22 each year and has reached over 80 million people in the past five years. The… Read more