2024 IAES Virtual
Home of the AE Warrior™
To our Sponsor
Talent in the Genes!
A father and daughter both battling Autoimmune Encephalitis AND both extremely talented!!
It’s how I feel. Basically, it’s the feeling that I’m being held back from doing the things I was made to do on this earth. I was once able go to the ends of the earth, to help the most poverty stricken people on this planet. And I long to continue to do that. ~Christopher Hooper age 57. Battling Autoimmune Encephalitis since 2016.
When your brain is so broken it forgets how to do the most basic of things. How to think, stay awake, move your body, or even forget reality. Because of these things and so many more, you can want to lie down and let yourself rot away. If you still want to find things to laugh about, moments that bring you joy, love to give and receive, just to live, then stand up and fight!~ Luka Hooper age 23. Battling Autoimmune Encephalitis since 2016.
Alvin the Cat
This painting was the last painting I did before my dramatic spiral into the world of autoimmune encephalitis in May of 2018. Depression, anxiety, pain, exhaustion, and the constant battle to try to continue pursuing treatments consume me. I still have my cat companion with me, though, every step of the way.~Haley Williams age 31
As a caregiver and advocate to my daughter who was diagnosed with Anti-NMDAR Encephalitis in 2021, I learned that we, as caregivers, have to find a place of peace in the midst of the war. Represented by this picture I painted, your peace can be a hobby or a beautiful peaceful place. Take care of yourselves!~ Mendie Milam, RN age 49
Overcoming the Noose
People affected with AE often feel they have a noose around their necks day in and day out. Warriors overcome. Even though this warrior has a noose around her neck, she still has her spear and is ready to fight. No matter what comes against you in this life, a warrior keeps fighting. You have this!!~ Mendie Milam, RN age 49
Gordon and Daria MUIR send their greetings from Aberdeenshire, UK
“Look what they done to my brain”
Too often I feel medical professionals and care-takers are focused on the fall out of the AE disease itself; the neurological outcome, the cognitive outcome, the physical outcome. While these may be important, not enough attention is given to what someone who had had AE experiences during the /duration/ of their diagnosis and treatment, and what the price of those experiences turn out to be.
My case was originally misdiagnosed as psychosis, as many of us are. I was taken to a local behavioral health unit involuntarily, where I lost my autonomy and ability to decide medical decisions for myself. I was subject or medications, procedures, and handled in such a way that I would have never given consent to, had I not lost the ability to communicate effectively, something that my AE had temporarily robbed me the ability to do. I endured medical abuse at both the hands of staff at this unit, and subsequently the surgical staff that I had turned to, to remove a tumor on one of my ovaries that had been found months later. ~Bat Easter age 32
Dedicated to Uncle Dan~Grace Flynn age 19
“I started drawing as therapy. It has helped me to arrive at a place in my mind where Autoimmune Encephalitis doesn’t exist.” Robert could only draw stick figures prior to his anti-NMDAr encephalitis diagnosis. His neurologist, Dr. Rae-Grant, refers to his advanced artistic abilities as ‘an awakening’. He has had no formal training. His artistic ability surfaced while working on an adult coloring page. Each year he has shared his gift to raise awareness of AE.~Robert Sheer age 50
Battle Creek, Nebraska
“Elixir of Life” by Sharon Bassell~age 67 AE Warrior from Australia
Florida AE Warrior
Maddi R. age 13
A moment in Time
I am the mother of an AE warrior. Libya Matney. Age 23. Diagnosed with Anti-NMDAR Encephalitis in 2021. ~Mendie Milam age 50
This painting was created by my daughter in the middle of her AE condition in Sept 2023. During this time, there is a lot going on inside her head and this is just one of them. ~Althea Ravelo age 17
Healing is not linear
AE is unpredictable & we are warriors for riding the non linear waves and for fighting for our lives. ~Gretchen Cannon
What do you see?
AE Warrior & Avid Avocate~Daisy Brown
Before and After the Rain
AE Warrior & Avid Avocate~Daisy Brown
The Chair & Table
My husband, John was diagnosed with Autoimmune Encephalitis in September 2021 after months of unexplained symptoms. He has since battled the disease and the side effects of its treatment, with multiple relapses, side effects and setbacks. John is the strongest man I know, but has been reduced to a mere existence. ~Pam Theabo
“It’s all in your head”
This work aims to capture my experience with autoimmune encephalitis, a stroke caused by complications from the AE and the recovery from this. I loved making it and being able to show how every part of the body is effected even if not visible from the outside. I tried to capture the chaotic and horrific nature of the disease and the psychiatric symptoms that haunted me through the monotone and semi-abstract design. With my left side paralysed I also used repetition of the leg to show the movement slowly coming back and the neuroplasticity through plastic neurons coming from the brain/spinal cord into the damaged areas. I tried to capture many elements including the dysautonomia, seizures, sensory overload, weakness, nausea, speech difficulties, vision difficulties, osteopenia from chronic steroid use, etc. I called the artwork ‘it’s all in your head’ as I spent 12 months being treated for psychiatric illness, with just under 20 psych medications, TMS, ECT, 10 day Ketamine infusion and over 6 months in psych wards being told it was mental illness as my body was deteriorating, I was having seizures, movement disorder, dysautonomia, becoming weak and catatonic. I found making this work very therapeutic to show others what it has felt like for me through the hardest times and show myself how far I have come. ~Bec Jones age 22
A shining path through the darkness
No matter what barriers the storm puts in your way, there is a sandy beach at the other side
The strongest Man I know
A tattoo which I got in June to honor John: The Strongest Man I Know and his battle with AE. ~Pam Theabo
Brain on Fire
Here is a picture of my husband tattoo of a brain on fire. ~Lorina Gutierrez.
Hero of this story
I’m an AE warrior of 10 years from Kentucky.~Jessica Stearns age 34