February is AE Awareness month! IAES will be very involved in promoting AE Awareness in many terrific ways throughout month. One of the many things we will be doing is publishing a few more patient blogs than usual. Each will cover something different. Each will highlight, in some way, a different type of AE or AE experience.

As we head into February and in hopes of raising AE awareness, we begin with a blog from a long time AE family member/caregiver and doctor. This blog touches the heart and raises hope! It our sincerest desire that you enjoy this series and will help in our quest to raise awareness so that we collectively move from a family of Warriors and Survivors to a family of Warriors and Thrivers!!!

February 2, 2021 | By Jennifer Mark, MD

I recently lost a beloved parent to anti-NMDA encephalitis. It is still hard to talk about it as my sister and I went through many challenges to get her diagnosed.  I understand the pain and difficulties that many of you go through with this disease and having physicians or other health care professionals who are unfamiliar with this disease and its treatments.

Over time, I have been willing to speak up about it as I hoped that I can educate others, one person at a time.  I work at a medical center that trains physicians so it is important to me, that I can increase awareness of this terrible disease.  It is my hope that if even one more person gets a proper diagnosis, autoimmune encephalitis can be recognized early and treatment begun thus, giving more patients and their families hope.

I was humbled tonight to find out that others have been listening.  One of my physician partners remembered some of my mother’s history and how it sounded very much like a patient she had been caring for that others had written off to untreatable and in need of palliative care.

Tonight, that family got answers. The lumbar puncture came back positive for AE with a specific match on an antibody.

All those countless hours I spent researching and looking for help resulted in something positive.  I was able to quickly offer information to my physician partner and in turn to this patient’s family.  I was able to offer proper guidance regarding this disease and treatments.  Most importantly, I could give this family hope which is so needed when a diagnosis is initially unclear.

I became a local resource for a rare disease that few have known.  IAES, I offer you my gratitude.  The information and resources I found though this organization, website and members have allowed me to be a resource to others.  I wish to say thanks for the outstanding education that you have offered me and my family. 

Graphic courtesy of a pediatric AE member/patient

Your generous Donations allow IAES to continue our important work and save lives! 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.