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A light at the end of the dark tunnel

A light at the end of the dark tunnel

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June 12, 2024 | By Kaira Frank

Message from the International Autoimmune Encephalitis Society Team:

The staff at IAES is proud to present to you the AE story of Kaira Frank. Kaira and her family show how persistence and positivity in the face of something completely unknown can change outcomes and exemplify the AE Warrior spirit!


Kaira Frank 2 376x500 - A light at the end of the dark tunnelAs a Junior in high school Autoimmune Encephalitis was probably the furthest thing from the minds of me and my parents. We did not even know what AE was but that changed in January 2019.

Strange symptoms began. My left leg would feel numb at times to the point that it did not feel as though it was there. At times, I had to physically drag my leg on the soccer field. Over the next several weeks, these strange symptoms spread over the rest of my body. I had small arm and leg jerks. I developed a smirk like smile on the right side of my face. Over time this graduated to upwards of 65 times per day.

In early February of 2019 I was admitted to the hospital for the first time. An EEG & MRI showed no abnormalities. After my second trip to the hospital, we were told my symptoms and issues were psychogenic in nature. I was given anti-seizure and depression meds and given a phone number to a psychiatrist. Both of my parents are social workers and were suspicious about this diagnosis and began to ask questions. They wanted to know about other possible diagnoses. Despite their concerns, we were denied further testing and was told to find better ways to manage my anxiety and to ‘just relax’! We attempted to get a second opinion, but the new neurologist was reluctant to further investigate because I was under the care of another provider.

As February moved into March, my symptoms and seizures worsened. My memory started to fail, my school grades began to suffer, and I was no longer able to drive. Other symptoms began like the desire to wear the same clothes over and over every day because I was convinced I had never worn them.

At the end of March, my family decided a trip up the coast may help to ‘destress’ in the hopes this may help me, in some way, find relaxation. Unfortunately, the opposite happened. The psychological issues worsened, and the seizures intensified to the point to being nonstop even during sleep.

After returning home my parents enrolled me in another health insurance plan with the objective of being able to find better and broader care. Within days, I was admitted to the hospital with a new neurologist. I was placed in a medically induced coma for 72 hours due to being status epilepticus in an attempt to keep my brain safe from the constant seizures. I was in the hospital for 3 to 4 weeks while further testing was done and so they could stabilize me. I was finally diagnosed with antiLGI1 AE. The care I received during this time in the hospital was terrific. I was fondly nicknamed ‘Dory’ from the movie Finding Nemo because of my memory issues!

Kaira Frank 1 281x500 - A light at the end of the dark tunnelAfter several rounds of IVIG, high dose steroids, Vimpat and lots of love from family and friends, I was finally allowed to go home in early May.

My AE path has been a long and crazy road, but I wanted to share my story. It has been 5 years since my diagnosis, and I am doing great!

I am currently off all steroids, will wean off IVIG starting this coming July and am taking a much lower dose of Vimpat. I graduated from high school during Covid and am about 1 year away from graduating from college with a major in Biology and a minor in Psychology.

I wanted to share this for three reasons:

1) I want to celebrate the fact that it has been 5 years since I was in what I would call the “worse state of my life”. It’s been a crazy road, but I have come out stronger because of it. I want to thank my family, friends, and boyfriend for being my rock during these past 5 years, as without their support and help, I wouldn’t be here.

2) Please do not stop fighting for what you think is right. My parents knew something was wrong with their daughter and continued to fight for the best care to figure out what was wrong, rather than letting some shady doctors decide I was crazy. What really pushed them to fight was the movie “Brain on Fire” where they felt understood and really pushed for the tests.

3) There is a light at the end of the dark tunnel! Don’t give up fighting, keep pushing to get better. You will have your bad days, trust me I know, and it’s okay to have them but always remember that you are stronger than your encephalitis!

I am also happy to answer any questions you might have!

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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. 

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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.  

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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.

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