September 4, 2020 | Tabitha Andrews Orth, IAES President
Dear AE Family,
Four years ago this month, IAES was born. Prior to that, the co-founders had been working together as administrators of a support group at this very address. Four years ago, experts in the field were few and far between. In the USA you had to travel to John Hopkins, Mayo, Upenn or CHOP for children. It was common to be misdiagnosed, undiagnosed, undertreated, and have a neurologist who was willing to have you be their first case of AE.
In 2014 support groups were full of people looking to understand AE and what to expect. Misinformation, alternative medicine, holistic remedies, and desperation was the mood of the day. We saw how people were getting sicker following misinformation and not getting proper treatment. Many would-be placed on psych holds or legally committed and turned away at ERs as psych cases. There was no place to turn if your treatment was denied, wanted to understand the disease or treatment, panicked that you could be relapsing, and it was rare to have a parent ask to join because their child was diagnosed.
We began by breaking away from the norm and created a new path forward. We became a science-based support group believing the ‘education was power’ and would lead to strong advocacy skills that would lead to better outcomes for the patient. We started to locate experts in the field and developed a global Doctor’s list. We located free and discounted flights and accommodations near AE centers, so people could get to an expert, taught people how to overturn treatment denials, created visuals to explain AE easily, prevented suicide due to psychiatric symptoms in AE, and spread awareness.
“If you build it, they will come.”
In 2014 we coined the phrase ‘AE Warrior’ to educate the public on the difference between encephalitis (who called themselves ‘encephalitis survivors) from AE as it was an on-going battle longer than a few weeks as seen in non-autoimmune types of encephalitis. In 2015 we designed the AE awareness ribbon and registered it on the International registry.
Today, it is common to see children diagnosed very early. Knowledgeable experts are peppered across the globe and a new area on neurology, autoimmune neurology, is taught as a specialty. Every aspect of your AE journey is supported via IAES. You can find resources for any aspect of that struggle, up to date research, videos, podcasts, slide shows, caregiver and patient support, rehabilitation exercises, resources that touch all areas of your daily life, overturn treatment denials, find help for discounted medical coverage and overbilling of hospital bills in the USA, personal stories and understand this group of diseases more readily because of IAES.
Last February IAES celebrated our inaugural AE Awareness month and rolled out our gift of love and help for AE families, AE trivia playing cards. In collaboration with Dr. Josep Dalmau, we developed the first educational and rehabilitation product in the world for AE. Our AE trivia cards are a ‘must-have’ for any patient or family touched by this disease. I wish something like that was available when I got sick in 2013! (See/order a deck here: https://shuffled-ink.myshopify.com/products/autoimmune-encephalitis-trivia-playing-cards?fbclid=IwAR0H_kiQ2fylP69P_7ByGpeGy31QVHqYQbdgyrRL4mX0sltMRulGzefUwfs).
Although we remain a small community, other organizations and groups have sprung up or expanded their services by following our example.
The world is a better place because of IAES. We truly have changed the entire landscape of the experience a patient and family experiences. It was a road untraveled.
This week we were informed that IAES has been nominated for The George H.W. Bush Points of Light Awards Celebration Inspiration Honor Roll for our work creating AE Trivia cards and educating the public on COVID-19 which began early on when we rolled out our website section March 3rd.
It is our honor and privilege to serve this community and we look forward to the years to come. One day there will be a cure for AE. Today we can say that some cases have been cured as Dr. Dalmau confirms with us, just like some cases of cancer are cured there is no cure for cancer. Just as some cases of AE can be cured yet there is no cure for this group of diseases either.
We have a great deal more work to do. IAES remains the only patient/family-centered AE organization in the world. If you can support IAES, a $5 -$10 donation does add up and make a difference.
Make a donation: https://autoimmune-encephalitis.org/donate/
Support us by becoming an IAES angel: https://autoimmune-encephalitis.org/iaes-angel/
Create a Facebook fundraiser: https://www.facebook.com/fund/IAESociety/
Other ways to support IAES: https://autoimmune-encephalitis.org/ae-awareness-month-2020/
On behalf of all the volunteers who dedicate their time and talents to IAES to ensure your journey is made easier, we thank you for the trust and support you have placed in us. It is our privilege to walk with you and serve this community.
Tabitha Andrews Orth,
International Autoimmune Encephalitis Society President
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.