Frequently Asked Questions
Where did the terms “AE Warrior”, “AE Journey” and “AE Family” come from?
In 2013, on Facebook, many people who were members of the support group that was the inspiration to found the International Autoimmune Encephalitis Society non-profit, were largely made up of patients with Hashimotos encephalitis. First as a trickle and then a steady flow to a raging river, patients newly diagnosed with anti-NMDAr autoimmune encephalitis and the other types of AE that had been identified at that time, sought out encephalitis support groups on Facebook.
As the AE patient entered the established encephalitis community they would join several groups. They quickly discovered they were a ‘zebra’ among ‘zebras’ within other encephalitis groups. We began to hear their confusion. The Encephalitis community was made up of people who had had infectious encephalitis or toxic encephalitis. With any viral encephalitis, the disease rages for a few weeks and is gone. The patient is left with varying degrees of brain damage and injury. With a 25% mortality rate, they survived. They were “Encephalitis Survivors”.
Along came newly diagnosed AE patients. They were under-going long-term treatments; their disease was still active, and many were enduring relapses. This was foreign to the established encephalitis community. Indeed, it was foreign to the medical community at large at that time, as it was such a new group of diseases that had been rarely seen or read about as research was infrequent. AE patients often heard “You can’t have encephalitis if you are still requiring treatment. It must be something else.” AE patients would follow along in these encephalitis support groups and become confused. Yes, they were dealing with the same symptoms, but these patients were not requiring on-going treatment, which caused AE patients to feel uncertain. Why am I different than all the other encephalitis patients I am coming in contact with?, they would ask. It was unclear to them that Autoimmune Encephalitis was a different disease process. than other types of encephaltis.
As an advocate, this became a concern. AE patients needed to understand their disease to become strong self-advocates and be able to become active members on their medical team. They needed to have an individual identity and not be made to feel set apart from the herd.
While talking to another co-founder of IAES, Gene Desotell now retired, he shared a similar experience his wife had had at an encephalitis conference and how upsetting and rejected she had felt from the encounter.
“These two groups of diseases are totally different.” I said. “There etiology is different. We have an on-going battle with Autoimmune Encephalitis. We face all sorts of road blocks on our journey like treatment denials and relapses. Treatment can be years long. We must keep fighting with all our might in a battle for our lives. Encephalitis patients are survivors. You know what we are? We are AE Warriors.”
The label, AE Warrior, explained the difference between encephalitis and autoimmune encephalitis instantly. IAES holds the trademark for “AE Warrior”, “#AEWarrior” and “Autoimmune Encephalitis warrior” as part of our unique brand. Additionally, the burning zebra logo is also trademarked in color and black and white to depict the combination of AE and rare disease. This gives IAES and autoimmune encephalitis a distinct public identity which allows us to further our mission of increasing awareness and research for this group of diseases, and assist patients, caregivers and families from diagnosis to recovery/remission and all the challenges they face on that journey.
Describing our experience as a “journey” or “AE journey” immediately identifies that treating AE is a long process. That process begins with getting accurately diagnosed and treated and the many challenges along the way to recovery. Treatment denials, relapses, school, work, applying for disability, home health support are just a few of the numerous pot holes a patient needs support with to reach recovery. Once recovery/remission is reached, a second wave of fighting is brought to the forefront as the patient focuses on rehabilitation from brain injury and accepting the ‘new you’ after AE begins.
These two terms were born simultaneously. AE patients immediately related to the moniker, AE Warrior and term AE Journey/journey and realized their battle would be long and arduous. It educated the patient, caregiver or family member instantly of the difference between encephalitis and autoimmune encephalitis. This identity quickly spread throughout the AE community and patients newly diagnosed to those who had been fighting for years, personally related to them. The theme of providing support from diagnosis to recovery and the many challenges on your AE journey became IAES’ mission statement. It is why IAES is referred to as “Home of the AE Warrior”.
Lastly, we referred to IAES members as our ‘AE Family’. Members are all walking the same walk. They may be at different stages of their journey but all of us know what it is like to manage the challenges. By providing support through education and advocacy, we can help make that journey an easier road to travel. Any one of us could be in the other’s position or has been. No one understands what it is like to walk this journey unless they have traveled it for themselves. We understand. At a soul level we connect and through our passion to reach recovery and see that the sacrifices we have had to make are recognized and honored, we help each other get through the journey. It is that connection, one that cannot be mimicked that bonds us together as a family. You could be me right now. I could be you. This is our truth. At IAES, you discover that you have a family you never knew you had. Your AE Family.
When new people find IAES, they are greeted with, “Welcome home, AE Warrior, to the family you never knew you had, your AE Family. We are here to help you navigate this journey with a lighter load. We are home to the AE Warrior.”