Outcomes after AE – #AskMeAboutAE

March 10, 2021

At the WED Conference we heard Dr. Tom Pollak talk about how after encephalitis you need to establish a new relationship with your body and brain. He cited research that after encephalitis, people are twice as likely to develop an anxiety disorder, nearly three times as likely to become depressed, and 114 times as likely to be diagnosed with epilepsy. He stressed the need for a multidisciplinary approach to care and advocates for research that will create a better understanding of the needs of people with encephalitis, so more targeted therapies can be developed. 

Dr. Gregory Day talked about how outcomes after anti-NMDAR encephalitis are currently considered ‘good’ with a recovery rate of 80% (Titulaer et al. 2013). The focus of these ‘good’ outcomes are primarily related to motor skills; Can you walk? Can you manage some day-to-day tasks? But there are more outcome measures to consider, like cognitive outcomes (return to work, driving & independent living), psychiatric/behavioral outcomes (PTSD, sleep disorders, mood disorders), reproductive outcomes (can you have children?) and quality of life of patients and caregivers. Dr. Day said by suggesting that outcomes are ‘good’ we may undermine efforts to make them even better. He also said: ‘try to convince a large funding agency to give you 20 million dollars for a clinical trial when the perception is we are already doing really well’. And that it is why it is so important to show where the gaps are in care, to show what the lived consequences of AE are.

Please join us and give a face to the consequences of AE. We will share these photos with the doctors and medical students attending the Building Bridges conference, to underline the importance of establishing outcome measures that matter to patients and their caregivers and drive patient-centered research forward.

If you are not on social media or don’t feel comfortable sharing there, you can email me (kimberley@aealliance.org) your photo as well. We will not include your name on any communications.

  1. Go to  https://tinyurl.com/58nnx2s4 and print the brain picture;
  2. Write on it what you are struggling with most;
  3. Take a selfie of you holding this picture, post to your social media using the hashtag #AskMeAboutAE, and let us know if you are a patient or a caregiver.