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March 24, 2021 | By Shadazah (Daisy) Brown
Message from the IAES blog staff:
We are honored to present the third blog in a series by a mighty AE Warrior who continues her battle and hopes to raise awareness of AE and how devastating it can be.
Part 1 is here: https://autoimmune-encephalitis.org/post/?highlight=Shadazah%20Brown%20
Part 2 is here: https://autoimmune-encephalitis.org/my-continued-story-about-having-autoimmune-encephalitis-2/?highlight=Shadazah%20Brown%20
I sit here and think about how to begin and write the third part or story or chapter in my AE journey. It is difficult because many days I am confused, tired and lose focus.
I have AE GAD65 Stiff Person Syndrome. My ongoing symptoms include many things one of which is the inability, at times, to be able to focus. My ongoing treatments have side effects as well. Sometimes I have moments or minutes where I blank out and seem to stare off into the distance or I have seizures. It is scary to be honest. I have had many hospitalizations in 2020 and into 2021. I am seen by many doctors, have appointments and treatments and have had various surgeries to help deliver the proper meds. I go to doctors at both St. Charles Hospital and at NYU. I have had catheters, ports, fistulas and all manner of devices to help deliver the correct meds to try and stabilize my AE. It is stressful and at times extremely painful! I have auras and at times cannot smell or taste a thing. I am diabetic and sometimes my glucose numbers are too high or too low due to AE and/or the meds and treatments. At times I find myself breaking down and hoping the pain will stop and wishing my AE would simply go away.
But….at each doctor’s visit or hospitalization I have hope that the next treatment or medication they try will help stabilize my AE. I have been battling this disease since my diagnosis in 2017 with the help of great doctors, family and friends at my side. I will continue in this battle and hope for AE remission!!!
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.
Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society cannot provide medical advice.
International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.