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Continuing My Way Up The Slippery Slope: A Poem

Continuing My Way Up The Slippery Slope: A Poem


September 27, 2022 | By Angie Fitch

Introduction from the IAES Blog Team:

The staff at IAES is proud to share with you a poem written by an amazing AE warrior that has been battling AE since the Fall of 2020. Each one of us feel the emotions, the ups and downs and roller coaster like ride AE takes us on. Thank you, Angie, for so eloquently putting pen to paper the feelings we all share!

Angie Fitch 4 n 281x500 - Continuing My Way Up The Slippery Slope: A Poem

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Good, bad, up, down, round and round.

I feel as though I’m on a merry-go-round.

Full of uncertainty if it will ever stop spinning; Full of frustration as I remain on my couch sitting.

I just want to live.

I just want to die.

I just want to do more than just survive.

I just want this nightmare to finally subside.

Convincing others and myself to remain positive and hopeful, when deep down inside I feel the opposite and woeful.

Confused, angry and sad is what I feel; But never reveal; All I can do is hope that I heal.

Why me, why now, why at all? The pity party sets in as I continue to fight and pray that I don’t give in.

The fatigue, the limitations, the pain and loss of ambition; The debilitating life that I have been given.

I will live; I will thrive; I will ultimately win and survive; This is what I tell myself; This is what I tell others as my pain remains undercover.

My strength then comes back; It’s going to be alright; it’s going to be okay; I will continue the fight day to day; I will keep the hope and learn to cope; I will continue my way up this slippery slope with hopes of support and love of some sort. 

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Tabitha Orth 300x218 - Continuing My Way Up The Slippery Slope: A PoemOn June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

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 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. 

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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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Be a part of the solution by supporting IAES with a donation today.

 

 

 

Movement disorders as a window into the diversity of autoimmune encephalitis

September 14, 2022 | by Catrina Hacker, PennNeuroKnow

Whether it’s walking to the grocery store or hugging a friend, movement is a central part of how we interact with the world. We don’t usually think about how we’re able to move, but every motion is part of a beautifully efficient process that coordinates a complicated network of cells across the nervous system. When neurological disorders disrupt this coordination, the efficiency of our motor system breaks down, which can lead to a variety of movement disorders and produce a broad range of symptoms. Movement disorders are a common symptom across the many types of autoimmune encephalitis (AE) and can be especially important to the diagnosis of AE in children.

Learning the language of movement disorders

The scientific literature is littered with dozens of specialized terms doctors use to describe movement-related disorders. For doctors, these terms are helpful because they can precisely describe specific symptoms that help them distinguish between different diagnoses, but they can be intimidating to non-medical readers. To begin, let’s break down a few important terms describing the disorders most common in various types of AE. Please note that this is not an exhaustive list and is only meant to capture some of the most common movement disorders that can result from common types of AE. (Click the name of the disorder to watch a Youtube video demonstrating some of these symptoms.)

Ataxia. Ataxia describes difficulty balancing and coordinating movements. In the most classic presentation of ataxia patients struggle with walking and running, particularly in situations that require more coordination such as walking up and down stairs1. Patients with ataxia can have a high risk of falling and in some cases they might have difficulty coordinating the movements necessary for speaking or writing2. One type of ataxia is thought to be caused by degeneration of neurons in a brain region known to be important for movement called the cerebellum1,2.

Chorea. Patients with chorea make involuntary, random movements. These brief and random movements are not repetitive or rhythmic but do appear to flow from one muscle to the next3. Chorea can occur in any muscle group, ranging from fingers and toes to facial movements. Interestingly, chorea subsides when patients are asleep4. Chorea is associated with too much activity of a neurotransmitter called dopamine that plays an important role in coordinating and initiating movement3,4.

Dystonia. Patients with dystonia experience involuntary muscle contractions that result in abnormal postures and repetitive movements. These contractions can occur anywhere on the body and are often painful. Like ataxia, dystonia can cause problems with speech and handwriting. In addition, patients with dystonia might experience foot cramps or drag their foot after prolonged exercise5.

Myoclonus. Myoclonus is a broad term describing sudden, involuntary jerking of muscles. This often involves twitching of a muscle followed by relaxation. If you’ve ever jerked awake while drifting off to sleep you’ve experienced a benign myoclonic jerk (this is not worrisome as an isolated event). Myoclonic jerks can occur on their own or be associated with different disorders6. The movements in myoclonus are quick and simple, while the movements in chorea tend to be slower and continuous. (Hear directly from a patient about her experience with dystonia and myoclonus here)

Movement disorders across different types of autoimmune encephalitis

While many types of AE can result in movement disorders, some subtypes have unique symptoms that distinguish them from others. Sometimes movement disorders are one of the most prominent symptoms to present themselves, whereas in other cases they may be more subtle and secondary to other psychiatric symptoms. Here we will discuss some of the subtypes of AE that most commonly result in movement disorders.

Several movement disorders often present together in patients with anti-NMDAR AE, the most common AE. Chorea and dystonia are observed in up to 90% of Anti-NMDAR patients7. While they can affect all limbs, in anti-NMDAR encephalitis they most characteristically affect the face and mouth8. In some cases these might be the first signs of the disease, so a clinician should consider the possibility of AE when patients visit the clinic with complaints of movement-related symptoms7.

Movement disorders are some of the most common symptoms of CASPR2-antibody associated encephalitis. Ataxia is observed in up to a third of patients and can be the only presenting symptom at disease onset, with other symptoms developing later7. The ataxia in CASPR2-encephalitis patients often manifests as a strong gait disturbance8 that occurs in brief, but frequent, bursts7. CASPR2-encephalitis can also present with a distinct form of myoclonus that distinguishes it from other kinds of AE. This form of AE is most common in elderly men9, and myoclonus of the lower limbs is often observed when patients are walking or standing. Spinal myoclonus leading to spasms around the abdomen has also been observed in CASPR2-encephalitis patients7. Finally, in some cases chorea is a prominent movement-related symptom of CASPR2-encephalitis7.

IGLON5-antibody associated encephalitis can also present with many movement disorders. While the best indicator of IGLON5-encephalitis is sleep disorders, some patients have also been reported to have chorea7. Another movement disorder reported in some IGLON5-encephalitis patients is axial rigidity, or rigidity in the trunk and hips. These movement disorders can make it difficult for patients with IGLON5-encephalitis to walk and balance and can put them at risk of falling8.

Many other types of AE are associated with movement disorders including (but not limited to) GlyR-, DDPX-, LGI1-, and mGluR1-antibody associated encephalitis7,8. It is important to note that although movement disruptions are common in many types of AE, they are rarely the only symptom and are not diagnostic on their own7,8,10. Instead, they can serve as one of many clues leading doctors toward a correct diagnosis. The neural explanation for how each type of AE leads to these movement disorders is not well understood. Determining the biological basis of the relationship between AE and movement disorders is an important area for future research that might help us to better understand these distinct subtypes of AE.

Movement disorders in children and adults with autoimmune encephalitis

In addition to distinguishing different types of AE, movement disorders are proving to be an especially important diagnostic tool for children with AE. Movement disorders can be observed in both children and adults, but they are more common in children, particularly those with anti-NMDAR AE. The presentation of anti-NMDAR AE in adults is now well understood and typically involves psychiatric symptoms and cognitive impairment as well as the movement disorders described above. The presentation of anti-NMDAR AE in children isn’t as well documented, but diverges from adults in that it more often includes seizures and movement disturbances7,10,11.

In many cases, movement disturbances are the first or only presenting symptom in children with anti-NMDAR AE. One set of case studies showed that four young patients eventually diagnosed with anti-NMDAR AE all initially presented with difficulties walking or coordinating movement10. Another study considered 50 cases of children with anti-NMDAR AE and found that motor deficits including dystonia of the hands and feet are key in diagnosing focal seizures that often accompany AE in these patients11. The initial presentation of anti-NMDAR AE can be ambiguous, and treatment is often delayed because a diagnosis is not immediately made. The presence of movement disorders and other disturbances (e.g., those accompanying seizures) along with other symptoms could be key signs to consider a diagnosis of AE in children10.

The diversity of movement disorders in various types of AE mirrors the diversity of the diseases themselves. Whether in distinguishing subtypes of AE or diagnosing children, they are a powerful spotlight under which the diversity of AE can be interrogated. Despite our growing understanding of how movement disorders can be used to diagnose various types of AE, there is still very little understanding of why different types of AE cause different types of movement disorders. Future work can leverage these known differences in movement disorders associated with different types of AE to better understand their biological basis and hopefully develop better treatments and cures. 

References

  1. Ataxias and Cerebellar or Spinocerebellar Degeneration | National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/health-information/disorders/ataxias-and-cerebellar-or-spinocerebellar-degeneration.
  2. Kuo, S.-H. Ataxia: Contin. Lifelong Learn. Neurol. 25, 1036–1054 (2019).
  3. Chorea | National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/health-information/disorders/chorea.
  4. Bhidayasiri, R. Chorea and related disorders. Postgrad. Med. J. 80, 527–534 (2004).
  5. Dystonia | National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/health-information/disorders/dystonia.
  6. Myoclonus | National Institute of Neurological Disorders and Stroke. https://www.ninds.nih.gov/health-information/disorders/myoclonus.
  7. Gövert, F. et al. Antibody-related movement disorders – a comprehensive review of phenotype-autoantibody correlations and a guide to testing. Neurol. Res. Pract. 2, 6 (2020).
  8. Uy, C. E., Binks, S. & Irani, S. R. Autoimmune encephalitis: clinical spectrum and management. Pract. Neurol. 21, 412–423 (2021).
  9. van Sonderen, A. et al. The clinical spectrum of Caspr2 antibody–associated disease. Neurology 87, 521–528 (2016).
  10. Yeshokumar, A. K., Sun, L. R., Klein, J. L., Baranano, K. W. & Pardo, C. A. Gait Disturbance as the Presenting Symptom in Young Children With Anti-NMDA Receptor Encephalitis. Pediatrics 138, e20160901 (2016).
  11. Favier, M. et al. Initial clinical presentation of young children with N-methyl- d -aspartate receptor encephalitis. Eur. J. Paediatr. Neurol. 22, 404–411 (2018).

 

 

 

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Your generous Donations allow IAES to continue our important work and save lives!

 

 

 

 

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

 

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 this 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.  

Be a part of the solution by supporting IAES with a donation today.

Cognition in autoimmune encephalitis


August 31, 2022 | Written by Sarah Griffith. Edited by Dr Mastura Monif, Ms Tiffany Rushen, Dr Loretta Piccenna, Ms Amanda Wells (consumer representative) and Ms Sasha Ermichina (consumer representative)

A message from IAES Blog Staff:

It is our honor and pleasure to present to all of you an overview of how autoimmune encephalitis can affect cognitive abilities. This overview is by the esteemed team at Monash University in Australia & lead by Dr. Mastura Monif, who is on the board of directors for us at the International Autoimmune Encephalitis Society.

We are proud to be in collaboration with Dr. Monif and her team in the Australian Autoimmune Encephalitis Consortium Project as we work closely with them to best support AE patients, caregivers and their families. This blog has been facilitated by IAES Support Services coordinator Mari Wagner Davis, with input from IAES volunteers Sasha Ermichina (impacted by GFAP AE) and Amanda Wells (caregiver for her daughter with AE). These IAES representatives provide input from their unique perspectives, helping to educate researchers in the difficulties that patients and families face.

You can find out more about the Australian Autoimmune Encephalitis Consortium and their efforts to help those with AE and their families via the following link:

https://www.monash.edu/medicine/autoimmune-encephalitis

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Cognition in Autoimmune Encephalitis – Summary

Source – Griffith, S., Wesselingh, R., Broadley, J., O’Shea, M., Kyndt, C., Meade, C., Long, B., Seneviratne, U., Reidy, N., Bourke, R., Buzzard, K., D’Souza, W., Macdonell, R., Brodtmann, A., Butzkueven, H., O’Brien, T. J., Alpitsis, R., Malpas, C. B., Monif, M., & Australian Autoimmune Encephalitis Consortium (2022). Psychometric deficits in autoimmune encephalitis: A retrospective study from the Australian Autoimmune Encephalitis Consortium. European journal of neurology, 10.1111/ene.15367. Advance online publication. https://doi.org/10.1111/ene.15367

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Background

Autoimmune Encephalitis is a rare disease that affects different regions of the brain. Patients with this condition can have a variety of cognitive symptoms (for example, memory deficits, slow speed of information processing, attention lapses, word finding difficulties, trouble with following complex commands, difficulties in judgement, difficulties in comprehension of complex tasks, difficulties in forming new memories, and difficulties in understanding tasks or situations). These symptoms can change from one individual to another individual, and can fluctuate over the course of the illness. Also different types of autoimmune encephalitis can have differing presentation of the above symptoms.

Historically (and to this day) clinicians and researchers have used a scale called the modified Rankin Score as a tool to monitor an individual’s function – i.e. how independently they can function in their day to day life. However, this scale is very inaccurate and it does not capture complex and specific issues that might be troublesome for the patient. The modified Rankin Scale also does not reflect the gravity of the individual’s symptoms and does not provide in detail information about specific symptoms and complaints that the individual with autoimmune encephalitis might be experiencing. Importantly, the scale does not measure behavioural, mood or cognitive outcomes in autoimmune encephalitis. Cognitive changes can be associated with long term disease related morbidity and can reduce quality of life. Therefore we set out to gain a better understanding of the cognitive difficulties in autoimmune encephalitis.

 What did the researchers do?

We gathered cognitive data from patients previously diagnosed with autoimmune encephalitis (retrospective data) from six hospitals in Victoria (Australia) to inform the analysis. Patients were identified retrospectively through medical records with a search for diagnosis of autoimmune encephalitis with a hospital admission between July 2008 and July 2019. Patients who met this criteria participated in a neuropsychology assessment of their cognitive function (i.e., memory, attention, language, judgement, planning, comprehension, and recall. We collected clinical data about each patient and also information of various clinical investigations (i.e. lumbar puncture results and MRI).

 

What did the researchers find?

The average age of patients at diagnosis was 49 years old and more than half showing as seropositive autoimmune encephalitis (meaning they had identifiable antibodies in their blood or their cerebrospinal fluid). Of the seropositive group:

  • nine patients had anti-NMDAR antibodies,
  • nine anti-Leucine-rich glioma-inactivated 1 antibodies (LGI-1),
  • seven Voltage-gated potassium channel complex antibodies (unspecified) (VGKC),
  • three glutamic acid decarboxylase 65- (GAD65) one α-amino-3-hydroxy-5-methyl-4-isoxazolepropionic acid receptor antibodies (AMPA),
  • one γ-aminobutyric acid B antibodies (GABA-Band), and
  • one collapsin response mediator protein 5 antibodies (CRMP5).

Forty two percent of patients had impairments on executive function tests (e.g. a set of tasks that includes working memory, planning, flexible thinking, and ability to remember multiple instructions, and capacity for self-regulation and ordering or prioritizing of tasks). The next most common impairment was on memory tests (e.g. the mental processes involved in acquiring, retaining and recalling information; 40.7% of patients).

For the first-time, we found 29 patterns of cognition among patients with autoimmune encephalitis in our analysis. The four most common patterns of cognition were:

  • Intact cognition (no cognitive deficits elicited),
  • Isolated memory deficits,
  • Executive dysfunction with memory impairment (combination pattern), and
  • Isolated visuospatial/visuoconstructional impairments (referring to visual or spatial perception of objects.

But, given we found 29 patterns means that cognitive outcomes in patients with autoimmune encephalitis are complex and need further detailed investigation.

What do these findings mean?

Our research highlighted that more detailed and systematic analysis of memory and executive function profiles in patients with autoimmune encephalitis is required. Impairments in memory and executive dysfunction can have huge implications for the patient and their caregivers, and tools that would better characterise and follow these symptoms in autoimmune encephalitis are needed. Understanding memory and executive function impairment in autoimmune encephalitis can help us in devising strategies that would assist patients with day to day function, but also monitor disease trajectory over time and delineate patient’s response to treatment. 

We could not predict good cognitive outcome (e.g. having ‘intact’ cognition after autoimmune encephalitis) in patients. We recommend clinicians provide ongoing comprehensive cognitive monitoring in patients with autoimmune encephalitis, and reactive intervention when required. An individualised approach will assist in the management the long-term morbidity of this disease, to minimise the effect on the individual’s quality of life and any damaging psychological outcomes.

 

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To download a plain language PDF of the paper summarized in this blog, click the button below:

 

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On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

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 this 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.  

Be a part of the solution by supporting IAES with a donation today.

My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

June 23, 2022 | By Reyna Felix

Introduction from the IAES Blog Team:

It is with great pleasure that IAES presents the story of one of our mighty Warriors. Reyna Felix, in her own words, explains the events that finally lead to her diagnosis during the beginning of a worldwide pandemic that left her alone without family and friends by her side at the very beginning of her AE journey. Her story was picked up by a few TV news channels and lead to an article written about her struggles in the Barrow Neurological Foundation newsletter. The link to this article is below. The Barrow Neurological Foundation strives to advance neurological research, patient care and provide education to help save lives. 

My name is Reyna and I am 29 years old. I have been married for 5 years (together for 11), I have worked as a 911 dispatcher for the past 7 years, and I am a dog mom to a fun rescue pup. I love to read, hike, exercise, travel, cook, and learn new things.

I am also a survivor of anti-NMDA receptor Autoimmune Encephalitis. Like most patients, my diagnosis was not easily found. The search for what was wrong with me included weeks of struggle for myself and my family. As you’ll read about in the article, I was dismissed from hospitals or left against medical advice. I spent time in a psychiatric facility, and eventually was correctly diagnosed and began the treatment process which led into the recovery process I am now in. I am missing many months of life from my memory, which is a common symptom of this disease. I received my diagnosis in April 2020 which was at the same time as a pandemic began around the world. This compounded the struggles experienced by my husband and family. Hospitals had restrictions on people accompanying patients in emergency rooms, ICUs, rehabilitation facilities, etc. and I was in no condition to be responsible for myself during the worst of my symptoms. There was about a 40-day period where my husband couldn’t be with me in person which increased the emotional stress of my condition for him. A teratoma was located and removed, I received a few IVIG treatments, and then I received two weeks’ worth of everyday Plasmapheresis which significantly improved my condition. It was during this time that I began to “wake up.” I spent two weeks becoming more alert, learning how to eat on my own, write, speak, walk, etc. during inpatient neurological rehab. I was discharged to return home with restrictions such as 24/7 supervision and outpatient therapies such as speech, physical, and occupational therapy that continued for 3 months. In June 2020, I started rituximab treatments that I continue to receive twice a year.

I continue to work on my mental and physical health, and I receive testing to ensure I am doing well by my doctors such as neuropsychological tests and cancer screenings. In September 2020, a local news channel picked up my story and did a short interview about Autoimmune Encephalitis which led to another news channel completing a story on me for my first World Encephalitis Day in February 2021. My neurologist shared with me that these two stories were shared amongst other doctors and hospitals and contributed to more awareness and for clinical studies needing to take place. More studies and awareness for this condition means that, someday, people will be diagnosed and treated properly which will lead to better outcomes for more people. I am not someone who enjoys attention.  I used to keep my life private but all I hope for from opening up about my experience is to help others get proper treatment, raise awareness for medical professionals and other people to understand more about the disease, and to show other patients and families that successful recovery is possible.

Autoimmune Encephalitis came into my life swiftly and had the potential to destroy it, but it has not won. My life looks differently now but I am alive. I have bad days and good days, but life is full of ups and downs that we can move forward through. While a lot of our symptoms and experiences can be similar, I think it’s important to remember that we are each individual so it’s also good to remind yourself to not compare your own personal progress and recovery to other patients.

To all my fellow warriors, we’ve got this. You are loved, you are strong, and you deserve to be happy and alive. To all our caregivers, families, friends, medical professionals, etc., thank you for what you do to help us each day. Additionally, I hold those who have passed from Autoimmune Encephalitis and their families close in my heart.

 

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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.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

Points of Light Award: A beacon of light, love and hope for all of us!

August 10, 2022

Our very own International Autoimmune Encephalitis Society President and founder, Tabitha Orth, has been honored with the Points of Light award! Tabitha & IAES would like to thank Points of Light for this honor. It is our fondest hope that all those suffering from Autoimmune Encephalitis, their caregivers, families, and friends have a less traumatic AE journey through the services IAES provides.

President George H.W. Bush, founder of Points of Light, said “The solution to each problem that confronts us begins with an individual who steps forward and who says, ‘I can help.’” President Bush founded the award in 1990 and formally recognized more than 1,000 volunteers as “points of light” during his administration.

President Bush saw the challenges facing the world as far-reaching and complex, and the solutions often felt out of reach. To tackle society’s greatest challenges and build a better future, he felt we must engage a wide range of people to make a positive difference in the world.

The Daily Points of Light Award honors individuals who change the world. Millions of people act on their power to do good every day, using their hearts, hands, and minds to help strengthen communities and solve persistent problems. On June 16th, Tabitha Orth, President, and Founder of International Autoimmune Encephalitis Society officially became the 7,315th “point of light”.

 

 

Below, please find comments from Mari Wagner Davis:

I nominated Tabitha Orth for the Points of light award because to me that is what she and the International Autoimmune Encephalitis Society have been to me, A Point of Light. A true beacon in the darkness of my illness. I was a nurse case manager who had seizures at work and was diagnosed with limbic encephalitis. I have no memories of my time in the hospital but seemed to become aware of my surroundings in day rehab. I then looked for information and support and found that the International Autoimmune Encephalitis Society provided the most accurate and helpful information available. As I recovered more, I was able to volunteer and, in that role, Tabitha helped me make use of the skills I still had despite my memory issues and fatigue. She is a never-ending cheerleader and a great role model as well as an expert at helping others understand the complicated medical world of Autoimmune Encephalitis. It was a no-brainer to see she was the perfect candidate for the award.

~Mari Wagner Davis

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Your generous Donations allow IAES to continue our important work and save lives! 

 

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

 

 

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 patients 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 support research, 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 autoimmune encephalitis 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.    

Be a part of the solution by supporting IAES with a donation today.

Using Electroencephalogram for quicker diagnosis and prediction of the likely course for patients with Autoimmune Encephalitis


July 27, 2022 | by
 Dr. Robb Wesselingh

A message from IAES Blog Staff:

It is our honor & pleasure to present to all of you an overview of the use of an Electroencephalogram or EEG for diagnosis and prediction in the treatment of Autoimmune Encephalitis by the esteemed team at Monash University in Australia & lead by Dr. Mastura Monif. The International Autoimmune Encephalitis Society is proud to be in collaboration with Dr. Monif and her team in the Australian Autoimmune Encephalitis Consortium Project. Dr. Monif is on the board of directors for IAES and we work closely with them to best support AE patients, caregivers and their families. You can find out more about the team and their efforts to help those with AE and their families via the following link:

https://www.monash.edu/medicine/autoimmune-encephalitis

 —-

Using Electroencephalogram for quicker diagnosis and prediction of the likely course for patients with Autoimmune Encephalitis

Publication:

R Wesselingh, J Broadley, K Buzzard, D Tarlinton, U Seneviratne, C Kyndt, J Stankovich, P Sanfilippo, C Nesbitt, W D’Souza, R Macdonell, H Butzkueven, TJ O’Brien, M Monif, Electroclinical biomarkers of autoimmune encephalitis, Epilepsy & Behaviour, 2022;128: 108571. https://doi.org/10.1016/j.yebeh.2022.108571

 —-

Autoimmune encephalitis (AE) is a brain inflammation disorder caused by antibodies. A person’s immune system mistakenly targets different proteins in their brain causing damage and inflammation. This can result in different neurological symptoms including seizures (sudden, uncontrolled electrical disturbances in the brain) and memory problems. Autoimmune encephalitis can be classified into different subtypes based on the brain protein targeted by the antibodies produced. The most common subtypes are anti-NMDAR autoimmune encephalitis, anti-LGI-1 autoimmune encephalitis and seronegative autoimmune encephalitis (in which there is no identified antibody). While treatment is effective and available, the diagnosis of autoimmune encephalitis is not straightforward. Also, knowing which patients need more intensive treatment is tricky.

Patients thought to have autoimmune encephalitis usually have a few clinical tests to confirm the diagnosis. They include brain magnetic resonance imaging (MRI), an electroencephalogram (EEG), and blood or cerebrospinal fluid tests to analyse the presence of inflammation. The EEG is a procedure that measures brain electrical activity (brain waves) by using electrodes placed on the scalp. It can show different patterns or irregularities depending on the person’s health state. For example, an EEG can show seizure activity, or it can indicate drowsy or comatose states. In some situations, it can also show very subtle changes that could be useful in our understanding of autoimmune encephalitis and guiding management. It is important for patients with suspected autoimmune encephalitis to have a diagnosis as soon as possible because earlier treatment leads to better long-term recovery. But doing multiple clinical tests takes time, some can be invasive or may only be available in certain centres. For this research, we wanted to find out answers to following –

  1. Can we use an EEG to identify different types of Autoimmune Encephalitis?
  2. In the early part the disorder, can the EEG tell us about a person’s likely course in the long-term (outcomes)?

How we did this work

We looked through the medical records of seven hospitals in Victoria, Australia for people who had possible autoimmune encephalitis and had an EEG when they first became unwell. Overall, 208 patients were identified and selected for our analysis. We collected data from 131 patients of their symptoms, seizures, treatment, and their ability to return to normal day-to-day living. Key clinical characteristics of the patients can be seen below:

We analysed EEGs from patients to find any brain wave irregularities or signatures (called biomarkers) that would show different subtypes of autoimmune encephalitis. Other EEGs were analysed that could predict which patients might have impaired functional outcomes in the long term.

What were the interesting things we found

  • We identified four specific brain wave signatures or biomarkers that were associated with one type of autoimmune encephalitis called anti-NMDAR autoimmune encephalitis.
  • We also found a disruption of the normal electrical activity of the brain that was more common in patients who had significant functional disability on discharge from hospital.
  • Large spikes of abnormal electrical activity called periodic discharges were seen in patients who ended up having long-term impacts on their day-to-day functioning.

What do these findings mean?

The brain wave signatures or biomarkers we identified can be useful for clinicians to recognise and use in practice as part of diagnosis and provide targeted treatment. 

The research could help clinicians to –

  1. More quickly identify the type of autoimmune encephalitis a patient has and provide a specific treatment strategy, and
  1. Recognise patients with autoimmune encephalitis who are likely to have more long-term functional disability due to their illness.

 —-

For more information and resources on anti-NMDAr encephalitis, visit this link here. To download a plain language PDF of the paper summarized in this blog, click the button below:

 

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Your generous Donations allow IAES to continue our important work and save lives!

 

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

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 this 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.  

Be a part of the solution by supporting IAES with a donation today.

Independence Day!

June 29, 2022 | By Jeri Gore

If you have Autoimmune Encephalitis or are a loved one or caregiver of someone with AE, you know dependance. The AE Warrior is dependent. We are dependent on many things be it friend’s and family’s ability to take us to doctor’s appointments, rehab, food stores or for a simple ride around the countryside. We are dependent on canes and walkers, computers, and sign language for communication. We can be dependent on stair or wheelchair lifts. We are dependent on medical teams to understand AE and suggest best treatment options. We are dependent on our AE family as a community to get us thru a particularly bad day or week or month. We are dependent on the minds and hearts of others to help, accept, understand, and love us.

If you live in the United States, you know July 4th, every year, is a national holiday. It is Independence Day. It is a day much celebrated with family or friends, with fireworks and cooking out. It is a day of fun and laughter and overall joyful celebration.

If you are an AE Warrior, you know the need and desire for independence. Our dependence on the many things we need to survive AE may not have been on our mental radar before AE took over our lives in one form or another. For an AE Warrior, independence may mean many things. It may mean not needing someone’s help to turn on the lights or start your computer. It may mean no longer requiring a cane to be able to walk. It may mean no longer needing one infusion or another. For me, independence was the ability to drive again. That day is forever seared into my brain. I felt like driving down some country road, windows wide open, sun on my face and singing at the top of my lungs. It also came when I was once again able to concentrate enough to be able to read and understand a book. I felt like I had conquered a giant mountain!! I felt independence and it felt good, really good! I wanted to shout it from a mountain top!

In the spirit of celebration, I suggest we honor our AE independences big and small. We may or may not celebrate with cook outs and fireworks but maybe a little ‘happy’ dance in the kitchen or phone call to a loved one. May we learn to commemorate those small and large events that mark progress in our AE journey. This may not be easy some days but maybe, just maybe if we celebrate these small milestones of progress, it will help propel us onward on those other days when forward progress seems slow or nonexistent.

Happy AE Independence Day to all of you AE Warriors, loved ones and caregivers!!

 

 

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Your generous Donations allow IAES to continue our important work and save lives! 

 

On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.

 

 

 

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 patients 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 support research, 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 autoimmune encephalitis 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.    

Be a part of the solution by supporting IAES with a donation today.

A Happy Ending for Surprise Diagnosis for One Doctor by Another Doctor from a Land Far Far Away

June 23, 2022 | By Mozna Osman

Introduction from the IAES Blog Team:

IAES is proud to present to you the AE story of a doctor that truly exemplifies our international impact! We hope you find this as inspirational as we have.

—–

I am a family medical doctor living and practicing medicine in Khartoum, Sudan. My story began about three years ago when I realized I was often feeling very tired and had terrible headaches. I decided to go and get my own blood work analyzed to see if there were any obvious issues going on. What I found out was that I had Malaria and a UTI (urinary tract infection). As a doctor, I decided to go ahead and treat myself with the appropriate medications needed for both issues.

I thought I was doing well and, on the mend, but I was not. Not long after this, my son found me, unresponsive, on the floor. I was admitted into the intensive care unit (ICU) of a local hospital and was in a coma for a month. As luck would have it, a visiting doctor from Chicago was asked to review my case. After reviewing my medical chart, he diagnosed me with anti-NMDA Autoimmune Encephalitis. He suggested a course of treatment that included medication and plasmapheresis. I feel very fortunate and blessed to have had my case reviewed by a doctor from so far away.

I am now feeling much but better but I still suffer from memory issues like many patients with AE. My short memory seems more affected by AE than my long-term memory but is getting much better. I am happy to report I am back to practicing medicine and am working at AL-Shaheed Wedatallah Medical Center in Khartoum. I am hoping for a bright, happy, and healthy future.

 

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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.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

Jackie Stebbins’ Book Release – Unwillable

June 8, 2022 | By Jackie Stebbins

Introduction from the IAES Blog Team:

Autoimmune Encephalitis Warrior and now author, Jackie Stebbins, released her first book regarding her AE journey to great acclaim in early June 2022! We are proud to support Jackie, to further AE awareness and to celebrate a very happy ending! Jackie’s book can be purchased on Amazon here.

—–

In some ways, I still cannot believe it’s true. I published a book! Susannah Cahalan, author of Brain on Fire, says Unwillable is “as moving as it is important.”

As I write this, it’s June 5, 2022. That means exactly four years ago, I took my place in a wing of a clinic in Bismarck, North Dakota, full of overstuffed, brown chairs and IV poles behind them. I was there for my first IV steroid treatment, to hopefully turn my brain back on from autoimmune encephalitis (AE).

As I sat in the recliner, broken from a violent seizure, lost from the past few months of hell, and still in a cognitive fog, my family prayed that the steroids pumped through my body could save my ailing brain. And in a grand stroke of luck, the steroids did almost immediately save me. My life was quickly turned around again, but so much had already been lost. Damage was done.

My husband took a photo of me that day. My eyes look tired, afraid, and lost. Four years later, I see that same tired, scared woman, but I want to hug her and tell her: It’s okay. This story has a happy ending.

The capstone of the AE journey I’ve been on is the publication of my memoir, Unwillable: A Journey to Reclaim My Brain. On June 1, 2022, Unwillable was officially launched and is available for purchase on Amazon.For me, this is one of the happiest outcomes I could have ever imagined after the past years of grief, loss, imbalance, heartache, tears, and life’s drastic changes. Unwillable was a way for me to process my trauma, share my feelings, and hopefully, help spread awareness about the illness that almost ended my life.

AE is a disease that devastates and destroys those in its path. Until we have standardized treatment, a cure, and no one else ever again suffers from this monster, the best we have is hope. Hope for better days ahead and dreams of an AE-free world. 

Wherever you and your family are in your journey with AE, it is my sincere hope that Unwillable finds a way to your heart and helps you in your struggles. 

In solidarity, 

Jackie M. Stebbins, Esq.

jmstebbins.com

unwillable.com

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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.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

 

Psychosis or Something More? A Family’s Search for Answers

May 26, 2022 | By Libya Matney

Introduction from the IAES Blog Team:

The International Autoimmune Encephalitis Society is proud to present to you the AE story of one of our mighty Warriors in her own words, an article written about her AE path in the University of Arkansas newspaper (link below) and beautiful artwork given to her by a wonderful friend and artist depicting her within the struggle of this devastating diagnosis!

 

As a 21-year-old stay at home mom to a precious little boy, Benjamin, I never thought that something so life-altering would happen to me. My husband and I had spent 9 months trying to conceive our second child. Finally, in June of 2021, we were able to get pregnant. Around the same time, many random things started happening to my body. Nobody understood what was happening. My scalp was burning, I had chronic migraines, confusion, insomnia, OCD tendencies, and I started showing aggression towards my family. All these things seemed to begin to rule my life. I began cleaning my house aggressively and trying to get rid of everything that I own. I would tear things out of the closets and try to reorganize them at the same time. I was exhausted. I was forgetting everything. I began to believe that I couldn’t be left alone to take care of my son. My family and friends began taking turns staying with me during the day. At this point I had been to the doctor several times and had multiple blood tests and two CT scans. Everything came back normal.

On August 19th, 2021, my husband and mother-in-law decided to take me to a hospital in Fayetteville, Arkansas (AR) to see if they could figure out what was happening to me. They performed the same blood tests and scans that I had received previously and, of course, they came back normal. On the way home from the hospital that day, I had what the doctors would call a “psychotic break”. I began kicking and hitting my husband in the car and trying to open the door to get out. My husband and mother-in-law frantically called my mom. She said that she could hear my husband in the background begging me to stop. My mom told them that she was on her way to us and to call 911. When the police and Emergency Medical Services (EMS) arrived, my mom had my doctor on the phone to convince them that something was medically wrong with me and that I needed to be taken to the emergency room (ER). When EMS tried to get me to the gurney I dropped to the ground. They had to lift me onto the gurney and into the ambulance. This was when I was transported to the ER in my hometown, North Arkansas Regional Medical Center (NARMC). The last thing I remember from that fateful day was stopping in a restaurant parking lot and trying to get out of the car. I don’t remember the police or paramedics being there. I don’t remember anything from the rest of that day or the month that followed.

My family has told me that while I was in the ER, I kept trying to leave. I would fight the medical staff and my family so hard that they had to restrain my arms and legs to keep me from getting out of bed or hurting myself. During the 4 days that I was in the ER at NARMC, I had a CT scan, an MRI, a spinal tap, and multiple blood tests done. I ended up miscarrying my child the last day that I was there. I was transferred to St. Bernard’s Medical Center in Jonesboro, AR on August 23rd, 2021. During the transfer, I slipped into an unresponsive/catatonic state. A procedure was performed to remove the tissue from the fetus, as well as the same testing that had previously been done in the ER. Other testing that was done consisted of EEGs and ultrasounds. Six days after being transferred I was placed on a ventilator because of having back-to-back seizures and my heart stopping. After two weeks of having no nourishment besides IV fluids, a feeding tube was also placed in my nose. I was in St. Bernard’s for a month before they sent my blood and spinal fluid to Mayo Clinic. An infectious disease doctor diagnosed me with anti-NMDA Receptor Autoimmune Encephalitis and GFAP. A few days before I left St. Bernard’s, I woke up with a feeding tube still in my nose. I did not know the month, day, or what was happening. I couldn’t walk or use the right upper side of my body. Also, due to having been on the ventilator and having the feeding tube, I could not talk. I was given a letterboard to communicate and the first thing that I asked about was my pregnancy. I couldn’t remember miscarrying the baby. On September 22nd, I was transferred to Barnes Jewish Hospital in St. Louis, Mo. Doctors began plasmapheresis (plasma exchange).  During the 10 days that I was there I received 5 rounds of it. I had another MRI, EEG, spinal tap, and two ultrasounds during my stay there.  Blood and spinal fluid samples were sent to Mayo Clinic to be rechecked. On October 1st, I was moved to Everest Rehabilitation Center in Rogers, AR, where I spent every day in physical, occupational, and speech therapy. I had to relearn how to walk, and I had to regain my physical strength and my voice. My last week at the rehab center, I finally got to see my son, Benjamin, after not seeing him for over a month. They included him in my physical and occupational therapy. On October 19th, two months after being taken to the first hospital, I was released to finally go home. When I got home, I started outpatient physical therapy at Mount Carmel Physical Therapy Center in Harrison, AR. I had physical therapy twice a week for 8 weeks. In January of 2022, I had two rounds of Rituxan infusions.

I am now back home with husband and son, and I can enjoy spending time with my family and friends once again. My life will never be the same after my AE diagnosis. I will always have to keep tabs on my stress levels and watch for signs of relapse. I still have months before I can drive again and am still at risk for seizures. However, I have learned a lot the past year. I’ve been cared for by people that will forever hold a place in my heart. I’ve grown, I’ve changed, and I am thankful for the life and family that God has blessed me with. 

Click here or the image below to subscribe to our mailing list :

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.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

 

An overview of N-methyl D-aspartate receptor (NMDAR) antibody-associated encephalitis

May 11, 2022 | by Seery N, Butzkueven H, O’Brien TJ, Monif M.

A message from IAES Blog Staff:

It is our honor & pleasure to present to all of you an overview of anti-NMDAR Autoimmune Encephalitis by the esteemed team at Monash University in Australia & lead by Dr. Mastura Monif. The International Autoimmune Encephalitis Society is proud to be in collaboration with Dr. Monif and her team in the Australian Autoimmune Encephalitis Consortium Project. Dr. Monif is on the board of directors for IAES and we work closely with them to best support AE patients, caregivers and their families. You can find out more about the team and their efforts to help those with AE and their families via the following link: https://www.monash.edu/medicine/autoimmune-encephalitis

 —-

An overview of N-methyl D-asparate receptor (NMDAR) antibody-associated encephalitis

Contemporary advances in anti-NMDAR antibody (Ab)-mediated encephalitis, Autoimmunity Reviews, April 2022, Volume 21, Issue 4, https://doi.org/10.1016/j.autrev.2022.103057

WHY WE DID THIS WORK:

  • N-methyl D-aspartate receptor (NMDAR) antibody-associated encephalitis, or anti-NMDAR encephalitis is a type of autoimmune encephalitis. Autoimmune encephalitis occurs when parts of the body’s immune system inappropriately attack certain components of nerve cells in the brain. Anti-NMDAR encephalitis is one of the most common defined types of autoimmune encephalitis. Young people who are on average 21 years of age, and females, experience the illness most commonly. But it can occur in older adults (over 45 years) and in young children (less than 12 years), where a relatively higher number of patients are males.
  • To make a diagnosis, doctors record key symptoms (e.g. memory issues, personality change, changes to behaviour alteration, or seizures) and clinical features from tests. The detection of antibodies that bind the receptor (NMDAR) from a patient’s blood or cerebrospinal fluid (fluid that cushions the brain and spinal cord) are also used to confirm the diagnosis of anti-NMDAR encephalitis. Antibodies are proteins produced by the immune system that in normal circumstances have a role in fighting infections. In certain autoimmune diseases, antibodies, along with other parts of the immune system, target normal components of a healthy individual.
  • Anti-NMDAR encephalitis can be treated using medications that selectively reduce components of the immune system, but as the illness is different from person to person, it is challenging to both diagnose and manage. The use of biological markers, or biomarkers (proteins, cells or other characteristics that can generally be detected via a certain test and are association with a particular disease), may be particularly useful for the diagnosis and assessment of how effective treatment is to manage a patient’s illness. Accurate and specific biomarkers for anti-NMDAR encephalitis still do not exist.
  • We did this update to collect the latest research findings from the field to inform researchers and clinicians who manage this condition and have a keen interest.

WHAT WERE THE THINGS WE DISCOVERED?

  • The N-methyl D-aspartate receptor (NMDAR) belongs to a group called glutamate-gated ionotropic receptors. These receptors are mostly located in a region of the brain called the hippocampus more so than other regions, and assist in excitatory transmission of nerve cells. In anti-NMDAR encephalitis, antibodies target a part of the receptor called GluN1.Anti-NMDAR antibodies exist in the serum part of blood and the cerebrospinal fluid.
  • Biomarkers in cerebrospinal fluid that have been identified include B-cell and T-cell chemokines, which are molecules that serve to attract particular white cells to a given part of the body (in particular, CXCL13 and CXCL10), interferon gamma, tumor necrosis factor alpha and interleukins (in particular 6, 7, 10 and 17-A). The levels of certain of these biomarkers were found to also coincide with poor long-term outcomes in patients.

TRIGGERS OF ANTI-NMDAR ENCEPHALITIS:

  • Two known triggers for anti-NMDAR encephalitis are the presence of an ovarian teratoma (an unusual type of tumour that can express nervous tissue) and less commonly, a viral infection of the brain called HSV-encephalitis.
  • Other than these two triggers it is less understood what causes the illness. At a molecular level, patient antibodies induce complex changes to the nerves by disrupting the functioning of the receptor. These findings may explain the variety of symptoms that patients experience, and varying and often impressive degrees of recovery.

CLINICAL FEATURES:

  • The diagnosis of the disease is not always straightforward. Symptoms and other clinical features may overlap with other diseases, and sometimes, at least in the blood, antibodies to the receptor may be seen without the disease itself. A broad range of clinical features exists in anti-NMDAR encephalitis. Patients can experience the following, which may change over time –
      • Changes in behaviour and hallucinations (psychiatric symptoms)
      • Difficulties in mental function (cognitive impairment)
      • Seizures
      • Abnormal movements and
      • Irregularities of the function of the autonomic nervous system (e.g. temperature, heart rate and breathing).
  • Therefore, detection of certain proteins and molecules in the blood or spinal fluid may assist in the diagnosis of the disease, and its management. A variety of candidates have been explored, but so far, generally remain limited in their use in clinical practice.

TREATMENT:

  • The cornerstone of treatment is suppression of the immune system. Research has shown that earlier treatment results in a better long-term outcome.
  • Exciting new treatment options are emerging, but research studies for these treatments are limited to relatively small numbers of patients and their approval for use by government therapeutic agencies is still awaiting. Therefore, we advise clinicians making the decision to use new therapies be made on based on each individual patient’s situation. 

WHAT DO THE FINDINGS MEAN?

  • This research can help clinicians understand how the illness progresses at the cellular and molecular level, its symptoms, the results of supportive tests (e.g. spinal fluid and MRI) and treatment options, and highlight areas of progress and needs in the current research.
  • Most patients will have some degree of recovery in their illness following appropriate treatment, but some symptoms can persist, particularly issues in mental function. Cognitive rehabilitation and follow up with psychiatry and psychology and in some cases antipsychotic medication, anti-depressants and mood stabilizers maybe warranted.

2021 Monif group L-R – Paul Sanfilippo, Nabil Seery, Katrina Kan, Robb Wesselingh, William O’Brien, Tiffany Rushen, Mastura Monif (Group Leader), Tracie Tan, Sher Chim Ting, Sarah Griffith, Andrea Muscat.

 

For more information and resources on anti-NMDAr encephalitis, visit this link here. To download a plain language PDF of the paper summarized in this blog, click the button below:

 

Click here or the image below to subscribe to our mailing list:

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 this 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.  

Be a part of the solution by supporting IAES with a donation today.

The Darkness of a Brain on Fire

April 27, 2022 | By Chelsea Wagner

 

Numbers, numbers, numbers – we all have them. It’s how we organize and make sense of what’s happened to us. It is how we put our experiences into boxes so that they don’t spill over into every aspect of our lives.

For me it was 1,000 mg of steroids, 7 Plasmapheresis infusions, 6 EEG’s, 5 MRIs, 4 CT scans, 1 PET scan, 1 botched lumbar puncture, 1 traumatizing bedside central line insertion, and countless fascinated residents, fellows, and physicians who had no idea what was happening to me right in front of them. All those numbers were packed into a 31-day hospital stay split between 2 hospitals in the largest medical center in the world. And those numbers lead me here, to you, to the Autoimmune Encephalitis community.

During February 2019, I began to experience subtle signs and had an overwhelming feeling that something was “off” with myself. I had trouble spelling words, remembering passwords and even had trouble speaking with patients I saw as a genetic counselor. I began experiencing extreme anxiety, panic attacks, and other neurological symptoms. I would eventually go to the ER after my doctor discovered a right sided facial droop, fearing that I was having a stroke, I was admitted to the first of 2 hospitals.

During my lengthy stay on the stroke recovery unit (the youngest person by several decades), the doctors would be puzzled by my progressing symptoms and my eventual catatonic state. I lost the ability to speak, read, and write. After being placed on high-dose steroids, I became violent and turned into what the nurses and my family would call the “she-hulk” and throw objects, kick walls, and wrestle with hospital staff as they put restraints on my ankles and wrists and bound me to my hospital bed for days at a time. During this time, I would become a prisoner of my own mind. I endured auditory and visual hallucinations of my worst nightmares and lived in multiple alternate realities, many of which included me dying. I would return to reality for only brief periods of lucid time – although I could not speak or recognize my family, the terror and confusion were respite to what was happening inside of my mind. 

Eventually, the first facility would diagnose me with seronegative autoimmune encephalitis – but did not implement the well established treatment for AE – and I was sent home from the first hospital on a steroid taper with no attempt at plasmapheresis exchange or IVIG. The doctors were frustrated with me and with what little I was able to comprehend. They had given up on me regaining any semblance of normal cognitive function. They told my husband and family that I’d go home and I’d either “get better, or I wouldn’t.”

I didn’t. In fact, I was actively hallucinating as they discharged me from my first hospital and then spent an interim week drifting in and out of reality – barely able to communicate, having dystonic movements and absence seizures. I was clearly getting worse. I was fortunate enough to have personal connections to another hospital due to my job as a genetic counselor in the medical center. I was rushed in for a same day appointment with a leading neurologist in Autoimmune Encephalitis and admitted directly from her clinic to my second hospital.

After receiving the first of seven plasmapheresis exchange treatments, it was like a fog was lifted. Blobs of strange people began to take the shape of my husband, my mom, my friends and family. I found my voice, although Broca’s aphasia made it hard to communicate, I started making progress in speech and occupational therapy. Everyday it felt like fireworks were going off in my brain – the zing of new neural connections being made – I would tell my therapists “I can feel it in my brain” – every sense heightened, every new word remembered became a cause for celebration, every step around the ward was a sign of my physical strength returning. Who would have guessed the exhilaration of holding a crayon in my hand could bring, or the relief of hearing my name and knowing it was mine? The doctors were impressed and optimistic about my recovery, but no one could predict how much cognitive function I would regain.  I was told I would likely never be the same person I was before. And in so many ways that is true.

Even after my second discharge, I had months of speech therapy, occupational therapy, and cognitive rehabilitation. I lost most of my independence – depending on everyone around me to drive me everywhere, make follow-up appointments, pay my bills because reading words on a screen was akin to reading hieroglyphics. I felt, at my worst, like a burden to those around me, weighed down by guilt and shame of the upheaval I had caused in our lives. I felt lost in my professional life, unsure of who I was or what I contributed to a society where my 19 years of education did not triumph over my brain trauma. I felt alone, because no one had been inside my mind and could understand exactly what I had been through: how harrowing, how terrifying, how humbling, it is to stand on the brink of insanity and be brought back from the darkness of a brain on fire.

No one except this community – reading your experiences, your struggles, your triumphs – they connect me in a way I never thought I would be able to connect and helped me understand my singular experience is part of a larger community experience. Almost three years later, I have returned to my full-time job as a genetic counselor and help patients navigate an overly-complicated and often frustrating healthcare system that I am all too familiar with. My compassion and empathy for those struggling with a diagnosis, finding resources, and advocating for themselves abounds. And I am grateful to be here, to be able to return to my career, to recognize my husband’s face, to be alive, to be typing these words. I know that when I lay awake at night (because, hello, insomnia!) thinking of how everything has changed for me since AE – there is light, there is hope, there is resilience, there is grit, there is strength in me. All it takes is a brain on fire to illuminate it.

 

 

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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.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

 

What happens when your autoimmune encephalitis treatments aren’t working?

April 13, 2022 | By WhereAreMyPillows.com

Message from the IAES Blog Staff: 

We are pleased to share with you that Where Are My Pillows has returned to her blogging game! The post below touches on the shared challenges of autoimmune encephalitis patients who relapse or whose inflammation remains refractory to first- or second-line treatments. Please join us in wishing her full success ahead as she embarks on the next chapter of her healing journey!

—–

This post is part of the recurring #WhereAreMyPillows blog column for the International Autoimmune Encephalitis Society and is adapted from a blog originally published on  www.wherearemypillows.com.

Introduction

Q: What happens when your autoimmune encephalitis treatments aren’t working?

A: You relinquish all unnecessary obligations, neglect your blog, and trade your human friends for Squishmallows who think no less of you for spending hours on end in bed.

Friends who don’t mind doubling as pillows—now those are real keepers.

Joking aside, it’s an exhausting and demoralizing road. While being diagnosed with autoimmune encephalitis (AE) in the first place is scary, failing treatments that normally give people their lives back is despairing. Recognition of the failure is slow. You’re told to hang tight and be patient for the immune system to adjust; but as months pass by without sustained improvements, the feeling that something is wrong begins to take hold.

The following runs through your head: Am I overreacting? Do I have permanent damage? Can this situation be salvaged? Will it be like this forever? Can I just give up and resign from this reality?

Embracing trial and error, and being fed up with the status quo

If you’re lucky, you have a doctor that realizes just how pernicious AE—brain inflammation—can be. More importantly, they realize they have multiple tools at their disposal to treat it and take responsibility for actually wielding them.

This can mean going beyond steroids, beyond IVIG, and sometimes even beyond rituximab (Rituxan). As far as I can tell, the doctors who create the best outcomes for their patients recognize that the amount of medications required is highly individual and that treatment responses are not always trackable via standard tests, especially for complex diseases like AE. And treating AE is ultimately a game of trial and error—part science, part art. The research can only run so deep for a rare disease that just started receiving attention in 2005.

Since I was diagnosed with AE in the summer of 2019, I’ve been put on methylprednisolone (Solu-Medrol), IVIG, Rituxan, plasmapheresis, and tocilizumab (Actemra) at varying doses, intervals, and timeframes. And just recently, I started mycophenolate mofetil (Cellcept) and received an infusion of cyclophosphamide (Cytoxan).

None of these are a surprising choice of therapies; they are all described in the medical literature as appropriate treatment options for autoimmune encephalitis. But what IS surprising to most people is that my doctors are actually:

  1. exercising all these options;
  2. overlapping some of them; and/or
  3. bothering to still treat me at all, given the protracted course of my illness (which began in 2014) and the fact I can still walk and talk.

It should not be surprising, but it is given the current paradigm of (arguably) conservative treatment that the average patient is offered. And sadly, a nontrivial subset of these surprised people are patients/caregivers that are still struggling, face seemingly impossible medical barriers, and rightfully suspect that there could be benefit from further treatment due to signs that their or their loved one’s inflammation is poorly controlled.

It’s heartbreaking to hear these stories and realize how easily I could be circling that drain.

That’s actually why I’m forcing myself to grind through the cognitive fog and write again. Some recent conversations have reminded me of how many people are needlessly struggling with obstacles on their AE journey, ones that can bypass others completely, all because of some stroke of dumb luck such as:

  1. The first doctor that saw the patient in the emergency room performed a spinal tap and believed the issue was neurologic rather than psychiatric.
  2. The patient lives in province/state “X” where a critical medication is on the formulary covered by the government/insurance plan—not province/state “Y” where a critical medication requires special authorization and is typically denied.
  3. The previously seronegative patient turned seropositive during a relapse, suddenly lending credibility to the diagnosis and making treatments more accessible.

While the field of autoimmune neurology is relatively new, it is not so new that one different roll of the dice should be able to dictate the outcome of a patient so profoundly.  It is unsettling how many more junctures my own AE journey could have been derailed at, the above bullet points being just a sampling.

There is clearly a need for greater physician awareness, better standards of care, and shifts to the present paradigm of treatment. And the more that patients/caregivers challenge the status quo, the sooner that change will come.

My goal in speaking out is to help level the playing field for those being caught in the AE quicksand. I’m far from the only person out there who deserves the opportunity to take another shot at permanent recovery. To those that have humbled me by sharing your stories or provided encouragement for me to keep plodding forward, thanks for galvanizing me into ending a four month writing hiatus.

Reexamining the mechanisms underlying autoimmunity

As mentioned above: I recently started Cellcept and Cytoxan in an effort to pull me out of my relapse that began in spring 2021. We had added Actemra to my regimen in July, hoping that would turn things around; but after 5 monthly infusions with transient improvements only and no compounding benefits, my primary neurologist agreed to pull me back into the hospital for plasmapheresis. It had worked beautifully for me in January 2021 and we were hopeful another 5 rounds over 10 days would work the same the second time around.

It turned out to be a bust. I’m glad I went through with it though; otherwise, I would always wonder whether plasmapheresis paired with stronger maintenance therapy would be a viable solution, rather than having to progress to chemotherapy. Again, it goes back to that whole “trial and error” concept. You evaluate the options based on your unique clinical scenario, make a strategic decision, compare the results with existing scientific knowledge, and synthesize all available data to inform your next steps. Along the way, you progressively refine your mental models.

But that’s not the approach you’ll find all doctors using. A few years back, my treatments were stalled by the terribly ignorant no detectable antibody = no autoimmune encephalitis explanation. Somewhere in the middle, it was the poorly reasoned it’s impossible to relapse on Rituxan you probably never had encephalitis but rather just have adult ADHD explanation. And now, several doctors later—and after scoring 2 standard deviations higher on an IQ test as a direct result of plasmapheresis, not psychostimulants used to treat an attention disorder—we’ve landed on an explanation that contains a couple more shreds of logic.

The doctor in charge of my current treatment plan is a neuro-oncologist who, in addition to cancer, treats a number of autoimmune conditions beyond just AE including myasthenia gravis and neuromyelitis optica. He explained to me in simplistic terms that when it comes to autoimmune neurological diseases, he looks at the individual and in broad strokes considers how much of the immune dysfunction is antibody-mediated/humoral vs. how much is cell-mediated. Response to treatment can provide clues.

IVIG, Rituxan, and plasmapheresis are known to be most effective for addressing antibody-mediated autoimmunity; since I’ve had diminishing returns from these treatments over the past few years, he suspects a significant proportion of my autoimmunity is now cell-mediated. This would also fit with the theory that I have GAD65 encephalitis, which is thought to involve a T-cell mediated immune response. While the call is debatable, both him and my other neurologist consider me a true GAD65 positive patient now rather than a seronegative one, as the antibody appeared in my serum and rose in titre on the 3 occasions we checked last year. Either way, my primary doc is confident that it’s time to move on to medications that target both B AND T cells—in my specific case, Cellcept and a Cytoxan.

Now, I am not a medical professional who can responsibly assess the validity of this framework; but this neuro-oncologist is well-respected amongst his peers, and the rationale for his decisions make a hell of a lot more sense to me than the ones provided to me by other doctors in the past.  While Rituxan initially got me back to baseline in 2019 and is a highly effective, permanent solution for many patients, it upsets me when doctors are adamant that Rituxan is a magic bullet for treating AE and that any ongoing symptoms absolutely cannot be due to uncontrolled brain inflammation. Or said a little differently: if your previous AE symptoms return but your CD19 test results are at 0, your AE is well-managed and we’ve finished our job. This hard-and-fast conclusion seems incredibly irresponsible and lazy to me, when even a cursory glance through the medical literature yields hundreds of articles discussing the utility of alternative treatment strategies across a number of AE scenarios.

Moving forward

The takeaway here is that if you are dealing with ongoing levels of significant dysfunction, experienced a period of relative normalcy followed by a return of disabling symptoms, or your specialist has limited experience with treating AE, there may be further runway to explore.

I say that with a note of caution, being careful to acknowledge not everyone is going to benefit from seeking further treatment and some are already working with wonderful doctors who are truly doing everything they feasibly can. But judging from going through 12 neurologists myself and hearing the experiences of hundreds of patients/caregivers, chances are your doctors may not have painted the full picture of the options out there. There is more to the immune system and the mechanisms underlying autoimmunity than what the average neurologist appreciates.

If you want to explore other options or doctors, take some time to educate yourself first. Otherwise, it’s going to be hard to effectively advocate for yourself or your loved one. Without slogging through research publications, listening to the experts in the field, and/or joining support groups (like the International Autoimmune Encephalitis Society Facebook group to hear from others living with this illness, you tend to reach a ceiling on how far you can get. Alternatively, you might gain reassuring perspectives that help you realize your team of doctors is already handling everything appropriately.

As for me, I’ll be doing my best to keep advocating for AE awareness and better outcomes while I recover in the months ahead. You can also expect to see me popping up more regularly in online support groups and social media—see you over there! 😉

For more insight into what living with autoimmune encephalitis looks like, read more at my blog below or find me on InstagramFacebook, or Twitter.

WhereAreMyPillows is an autoimmune encephalitis survivor from Canada. Her favourite activities include writing on her health blog, taking photos, doing yoga, and finding her next spot to take a nap. 

Join her on the IAES Facebook group, and on her WhereAreMyPillows Facebook PageInstagram and Twitter #wherearemypillows

 

Click here or the image below to subscribe to our mailing list:

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.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

 

Through the Eyes of Mom

March 23, 2022 |By Luz Neira Alvarez

A message from the IAES blog staff:

The staff at IAES is proud to present to you a poetically and beautifully written blog from a mother to a daughter with AE! This shines a light on the heartbreak, caring and love AE brings forth in those that care about us most!

 ——–

The wind caressed your face in the freedom, flying was your passion, not just living every day for 12 years, but imbuing passion in your brush strokes, mixing colors was your entertainment, how can you not reminisce about fulfilling the limits of your imagination, you created more than a surprising image. Keeping your body constantly in motion freed ideas, you visited new and beautiful paths, constantly envisioning and planning but….

Little dove from a thousand and one stories…. who interrupted your path? I don’t often see your amazing characteristics anymore. I have been waiting for a long time for your visits, your song, your magical touch on the paper when you flap your wings. I’m tired of waiting and you have not returned. In my dreams I hear your singing, sad and confused but faint. In your stead someone else has arrived. It looks like you, but I look, and I look again and question if it’s you. And if it is you, you have come back hurt, hard to recognize and with a white feather on your head. Suddenly, I could see in your eyes a flame and I could see how your brain was engulfed by it. What is happening? I asked. I hugged you and I could enter an unknown world. I could see how you ran, and the fear took over you. I could see how your heartbeat desperately and all your organs were affected. You wanted to be in control of everything, but it was impossible. The uncontrollable movements did not leave you alone for a second. Everything was different. I could see how your shaking made it so that your color mixes and brush strokes went the opposite direction than what you desired. Your emotions were confusing, but no more description is necessary. Just by looking at you I could see how you fought so many obstacles trying to fight for yourself, but you couldn’t. I started to try to understand what you were going through but it was hard. Even through the unknown, I vowed to help you out of this situation. I looked at one of your legs, stiff and rigid. I tried to move them, and I found a two-letter message, A.E. It can’t be! That was my reaction, but I wasn’t afraid. When I finally understood it’s meaning, I understood your reality. Since that moment, I haven’t stopped fighting for you. I sheltered you with my faith and I declared with the love of a mother that the giver of your life you re-create each part of you. It would take some time, but so it has been.

I’ve flown with you to different places with hope. You have endured painful situations, but I see your scars starting to heal.

Today, I can see how my little giant, with scars all over your body and brain, has re-learned everything again. To me, this is not an obstacle but an opportunity to do it again, and better than the first time.

You get up and have problems walking. Sometimes you hurt yourself again, but we help you get back on your feet. Today, I see your feathers, hopes, dreams, courage, strength, and desire to live.

You are the paint for those that need art in their life. Your experience becomes the path to understanding for the new birds following you. Your strength motivates those that need it the most. Your life shows the entire world that there is no limit for human beings. It shows that starting again is an opportunity, that our differences are what makes us unique, that our weaknesses become strengths.

Strength! We are not alone. We are the best warriors and protagonists in this unknown world.

 

 

Click here or the image below to subscribe to our mailing list :

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.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

 

Falling through the looking glass…


March 9, 2022 | by Rachael Muggleton

In May of 2020, I was a healthy, vibrant, smart, loving, pre-med student at Penn State, nicknamed the ‘mayor’ of my large friend network … until I fell acutely ill. Within 7 days of hospital admission, for what seemed like some type of stress induced altered mental status, I became catatonic. My mom watched in horror as her daughter’s light rapidly dimmed; losing a piece of what defined me each day. By day 7, I no longer spoke or appeared to recognize anyone, my heart rate became unstable, I could no longer walk or eat, and my kidneys began to fail. I was rushed to the University of Rochester Medical Center (URMC) with a preliminary diagnosis of Anti-NMDAr Autoimmune Encephalitis (AE) – an illness my family had never heard of, but one unfortunately they would get to know very well over the next six months of my horrific journey. 

Full disclosure — this part of my story comes from my mom; I don’t remember anything from my admission until fuzzy memories of my time in inpatient rehab 5 months later. By the time I reached URMC I was catatonic, seizures were starting to take over. My mother described the surreal experience as ‘seeing our beautiful Rachie rapidly falling through the AE ‘looking glass’ – a tumbling, bouncing, free fall which lasted for days, weeks, eventually resulting with me being placed on life support for months’. 

Timing is everything, right?! It was during COVID lockdown, visitation was not allowed. My family was no longer able to be by my side. For 42 days, physicians and nurses cared for me while in a medically induced coma; trying to quell the relentless seizures. My mom sat on the virtual sidelines, distraught, making decisions regarding PIC lines, arterial lines, sedation, feeding tubes and a tracheostomy – decisions she never imagined she’d be making for her child, who outside of a tonsillectomy, was the picture of health. Without the communication, compassion, trust and love I received from the URMC team, my mother said she wasn’t so sure she would have been able to get through those first 42 days. They were her eyes, ears, and most importantly, heart. 

When restrictions finally lifted and my parents were able to be by my side, they witnessed firsthand what a cruel, relentless illness AE was. There is no official playbook. My mom, a person who prefers order and predictability, was at a loss watching the team trying to control an illness that twisted and turned, never letting up. AE laughed at us and didn’t care how desperately we wanted it to release its grip. During this acute phase, one of my Neuro-intensivists explained his view on Anti-NMDAr AE (after treating a handful of cases each year) to my mom – ‘It comes out of nowhere, attacks HARD, stays as long as it pleases, eventually leaves, rarely returns. Our job is to treat Rachael with what we know works and keep her alive until it leaves”, and they did just that. I received steroids, plasma pheresis, IVIG, Rituxan and when things still seemed to be stalled, Cytoxan. I was also placed on a strict KETO diet, which in some pediatric patients has been proven effective in reducing/eliminating certain type of seizure activity. 

By mid-August of 2020, my mom tells me, “Our ‘Alice’ ended her free fall and SLOWLY started to reemerge!”. Day by day, small pieces of me started coming back. Eventually, the ICU staff took me out to the children’s garden at URMC (safety protocols in place (!)) to see my brother Andrew for the first time in 4 months (pictured)! 

My family and team celebrated each breath on my own, swallow of water, baby step, new word, and smile! When it was finally time to leave my nurturing Neuro-ICU ‘nest’, the team through me a dance party — sending me off to inpatient rehab in style! Since I have no memory of that time, I’m thankful it was recorded! Taylor Swift’s ‘Shake it Up’ will forever rock as my survival song 😊! 

My dance party send off!

I was released from the hospital in October 2020, just short of 6 months. While my journey was far from over, I was on my way! I still needed to be weaned (carefully) from 8 different anti-seizure medications, regain my cognitive functions and physical strength and dexterity. Through the work of an amazing rehab team and sheer determination, I made my way back. By the summer of 2021, I was taking college calculus II and preparing for my college return in the fall. 

But here’s the best part of my story! In December 2021, I spent a week in the URMC Neuro-ICU, only this time NOT as a patient but rather to shadow the amazing physicians, nurses and professionals to learn firsthand the world of intensive care neurology. As a result of this shadowing, I’m sure they hope I choose Neurology as my specialty (maybe?!), but FAR more was gained from this experience! Rarely do providers, nurses, and staff get to see the results of their amazing efforts, and a recovered AE patient rarely gets to come back to see their heroes in action — Life came full circle. 

I finished my fall semester (Deans List!) and as I write this, and I’ve returned for my final semester at Penn State. I’ll begin studying for the MCATS with the goal of medical school in 2023 (maybe URMC?  😊). Autoimmune Encephalitis was a cruel thief who tried to steal me and subsequently a year of my life, but as the Mad Hatter said to Alice, ‘If you knew time as well as I do, you wouldn’t talk about wasting it’. I’m not about to waste it!! 

My mom reminds me often; I have a story to tell! I think it’s a story of a young woman falling through the looking glass — finding beauty, love, compassion, and competence all along her journey. However, her name isn’t Alice, it’s Rachael. 

Never. Lose. Hope ❤️. 

August 2021, me, mom, and stepsister Kaitlyn 

 

Click here or the image below to subscribe to our mailing list :

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.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

 

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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Autoimmune Encephalitis Trivia Playing Cards

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