It is the Season When We Give Thanks

It is the Season When We Give Thanks

Barbara Layt Vujaklija | November 28-2019

No matter the origins in your part of the world, during the autumn or early winter there is usually some sort of harvest or thanksgiving festival. A time for people to share the earth’s bounty with friends and family and gather together to renew and strengthen the bonds we share.

Growing up in England I remember being paraded from school across the village street to the local church which was decked out with bales of sweet-smelling hay, turnips, parsnips, carrots and all manner of other foodstuffs (both fresh and canned or purchased), plus magnificent late flowering plants. The church was filled with the earth’s splendor and the folk of the village. We elementary school children dressed in our best took our place in the choir stalls. After the sermon, we were to sing a few songs that expressed everyone’s thanks for the bounty before us. The foodstuff was later distributed to the poor of the village.

Since coming to live in America at the age of 20, I have discovered a new way of giving thanks to the earth’s bounty and family and friends.  I have found the customs of Thanksgiving here in the USA to be comforting and enriching.

What am I, as someone with Autoimmune Encephalitis, thankful for?

I am thankful for my improving health, and for my family who has stayed beside me during my trials. I am especially thankful for my son-in-law and daughter who came to live with us to be my caregiver. Thanks to Toys-for-Tots and local food drives, I still have the satisfaction of helping those less fortunate than myself.

Here, at the International Autoimmune Encephalitis Society, we asked members what they were thankful for.  Their responses are below:

Thanks for understanding

For this Thanksgiving, I am a warrior who is thankful for my husband, my family, my neighbors, and IAES. These people know that despite having AE I still have a lot of knowledge and am an intelligent woman.

I am so thankful for everyone at the International Autoimmune Encephalitis Society, they help me to feel that I will make it through this, my husband who has learned to deal with my poor memory, my family who supports me, our awesome neighbours and everyone in this world who has learned in one way or another that disabled people have so much to offer.   – Mari Wagner Davis

 Thanks for loving and listening

I am thankful to have a loving kind man that has been with me every step of the way and helps me cope every day. I am also thankful for my best friend who listens and talks to me about anything and whatever I need.  – Katherine Crow

Thanks for life and a new me

Life 🙏🏻 Thankful to still be alive and getting the chance at the new me. We all know the outcome could always be worse with this disease. Happy Thanksgiving.    -Dayna Burns Rudy Munoz

Thanks to the Lord

For Thanksgiving, I want to say I am very thankful for the Lord being present with me and carrying me through a three year battle with AE. Especially when I was hallucinating in the psychiatric hospital, thinking everyone was plotting to kill me. He gave me a peace that I would survive and be OK. And I was.
-Wayne L. Wall

Thanks for hope, life, love

I am thankful that despite everything I can still have some semblance of a normal life, that my husband still loves me and cares for me despite everything, and I still have hope, love, life, my children, husband and the best of my friends and family in my life. I’m thankful that the chaff has been able to be cut away, so I can enjoy and wholeheartedly love those who are genuine in my life.
-Cathy Bolton

Life and smiles

I am thankful that my son did not die when he first got sick. He was very close. I am thankful that he was given a cheerful, strong and enduring spirit that touches the lives of so many he knows. I am thankful for his smiles and that he always compliments people and wants to care for them. I am thankful for the opportunity to enjoy the gift of every day and the ability to live a full life with him. Happy Thanksgiving!
Lora Strange

This group

I’m thankful for finding this group because many of my questions have been answered here. Also because I don’t feel like a strange person anymore.
Michelle M. Caamaño

Caregivers

I’m thankful for my husband and son who are also my caregivers.
Amy Underwood-Crossley

 

Make a Comment below to share what you are Thankful for

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

 

The “Immune” in Autoimmune Encephalitis: The Role of T and B Cells

The “Immune” in Autoimmune Encephalitis: The Role of T and B Cells

Nov-27-2019 | Carolyn Keating, PennNeuroKnow

The Immune System: An Explainer

When we catch a cold, get an infection, or otherwise become sick, our bodies use a natural defense mechanism called the immune system to fight off what’s attacking us.  The immune system has two ways of responding1.  The first, called innate immunity, involves physical and chemical barriers like the skin and saliva, as well as many different types of cells that “eat” and destroy whatever is causing the trouble.  While this innate response happens very quickly, then the downside is that it’s not very specific, and the immune cells can damage healthy parts of the body while trying to gobble up the foreign invaders.  In order to specifically target particular offenders, the body uses its second way of responding: the adaptive immune system.  This response can take days or weeks to develop but is also able to remember what the foreign invader looked like, so if it attacks again a targeted reaction can occur faster than the first time.  To acquire this immunity against a particular foreign substance, the body uses two types of cells that act in different ways: T cells (which develop in an organ called the thymus, that’s where the “T” comes from) and B cells (which mature in the bone marrow, hence the “B”).

 

These two cell types are able to attack so specifically because each one recognizes a particular structure, called an antigen, on a foreign substance.  For instance, one T cell might recognize a certain part of an influenza virus, while another could recognize a specific part of a bacterium; the same situation also holds true for B cells.  The T and B cells travel around between different lymphoid tissues (organs like the spleen, tonsils, and lymph nodes, the last which are spread throughout the body) until they encounter their particular antigen.  Once activated by their antigen, the T and B cells leave the lymph tissues and work in different ways to fight off the foreign invader (Figure 1).

Types of T and B cells

T cells come in many varieties, but the two major types are cytotoxic and helper.  Cytotoxic T cells (sometimes referred to as CD8+ T cells due to a particular identifier on their surface) travel to the disease site to search for cells that also bear the antigen that activated them, and destroy them.  Helper T cells (sometimes referred to as CD4+ T cells), as the name might suggest, help activate other parts of the immune system.  There are many subtypes of helper T cells that activate different types of responses; for instance, some promote the cytotoxic T cell response, while others activate B cells. Another kind of CD4+ T cell called regulatory cells actually tells the immune system, not to attack2.

 

Unlike T cells, B cells do not destroy their target.  Instead, once they are activated by their antigen and T helper cells, they mature into plasma cells that produce antibodies, proteins that recognize the same antigen as the B cell.  These antibodies essentially enhance the innate immune system and act in several ways, including neutralizing toxins, signaling to other immune cells that a cell should be attacked and destroyed, or activating complement.  Complement is a group of proteins (not cells) that make up yet another arm of the immune system.  These complement proteins can recruit immune cells or directly kill foreign cells themselves1.

 

T and B Cells in Autoimmune Encephalitis

So what happens in autoimmune encephalitis (AE)?  In this and other autoimmune diseases, the body mistakenly recognizes part of itself as a foreign invader and mounts an attack. Scientists believe that AE starts when a tumor or virus causes proteins from neurons to be exposed to the immune system. The proteins get picked up by immune cells outside the brain that go on to activate T and B cells in lymphoid tissue. These activated cells then make their way into the brain where they cause AE3,4.  Which cells are responsible for causing the disease depends on what antigen sets off the immune response.

In cases where the antigen comes from inside a cell, cytotoxic T cells are the culprits.  When proteins from inside neurons like Hu, Yo, or Ma2 are the antigens, that usually indicates that the immune system first encountered the proteins in a cancerous tumor, which can express proteins from all sorts of cell types (this cancer association is why these antibodies and diseases are called “onconeural,” or “paraneoplastic”).  Cytotoxic T cells fighting the tumor can make their way into the brain and kill neurons5.  This cell death is likely part of the reason why patients with these diseases have poor recovery.  Antibodies from B cells that have matured into plasma cells can also be produced in response to the tumor, but they do not contribute to AE symptoms6.

Antibodies do have a strong role in producing AE symptoms when the antigen comes from the outside surface of a neuron, like the NMDA receptor for instance.  These antibodies can still be formed in reaction to a tumor, but this is less common.  Research on NMDAR encephalitis, in particular, has revealed the presence of B cells and antibody-secreting plasma cells in the brain7,8.  Because the antibodies have access to the surface proteins they target, they can bind to them and interfere with their function.  In the case of NMDAR encephalitis, it’s thought that the antibodies cause the receptors, which normally are exposed to the outside of the cell, to be taken back inside so that they can’t function properly.  Once the antibodies are gone the receptors can return to the cell surface, reversing many of the symptoms9.  Unlike diseases in which the antibodies target intracellular proteins, in NMDAR encephalitis there are few to no cytotoxic T cells in the brain or neuronal death5,7,8.  But while there are little to no cytotoxic T cells, there have been reports of helper T cells around blood vessels in the brain, including one type called Th17 that act to enhance the immune response10.

 

In other cases of encephalitis with antibodies again a cell surface protein, such as LGI1, CASPR2, or GABA receptors, the precise immune reaction is less certain and in some ways seems to be a little different from NMDAR encephalitis.  B cells and plasma cells are still found in the brain, and antibodies also play a major role in causing symptoms5,11.  For instance, antibodies against the GABAB receptor block it from functioning, while antibodies against LGI1 can disrupt interactions between proteins and lead to a decrease in AMPA receptors12.  The involvement of T cells is unclear and may vary depending on the disease-causing antibody. For example, cytotoxic and helper T cells have been found in the brain of anti-GABAB receptor patients11, while few T cells were found in anti-VGKC-complex patients5.  In addition, scientists sometimes observe signs of complement, the protein arm of the immune system that can kill cells5,6.  In line with the presence of cytotoxic T cells and complement, neuronal loss is sometimes reported5,13.

 

Overall, the type of immune response the body produces appears to be dependent on the specific antigen. In general, diseases with antibodies that target intracellular proteins like Hu, Yo, or Ma2 involve cytotoxic T cells that kill neurons.  In contrast, diseases with antibodies that target cell surface proteins like NMDAR, LGI1, and GABAR involve B cells in symptom production. In this second category, the role of T cells and complement may vary depending on the particular antigen.

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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

 

 

References

  1. Parkin, J. & Cohen, B. An overview of the immune system. Lancet 357, 1777–1789 (2001).
  2. Corthay, A. How do regulatory T cells work? Scand. J. Immunol. 70, 326–336 (2009).
  3. Venkatesan, A. & Adatia, K. Anti-NMDA-Receptor Encephalitis: From Bench to Clinic. ACS Chem. Neurosci. 8, 2586–2595 (2017).
  4. Dalmau, J. NMDA receptor encephalitis and other antibody-mediated disorders of the synapse: The 2016 Cotzias Lecture. Neurology 87, 2471–2482 (2016).
  5. Bien, C. G. et al. Immunopathology of autoantibody-associated encephalitides: Clues for pathogenesis. Brain 135, 1622–1638 (2012).
  6. Damato, V., Balint, B., Kienzler, A. K. & Irani, S. R. The clinical features, underlying immunology, and treatment of autoantibody-mediated movement disorders. Mov. Disord. 33, 1376–1389 (2018).
  7. Martinez-Hernandez, E. et al. Analysis of complement and plasma cells in the brain of patients with anti-NMDAR encephalitis. Neurology 77, 589–593 (2011).
  8. Tüzün, E. et al. Evidence for antibody-mediated pathogenesis in anti-NMDAR encephalitis associated with ovarian teratoma. Acta Neuropathol. 118, 737–743 (2009).
  9. Dalmau, J. et al. Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies. Lancet Neurol. 7, 1091–1098 (2008).
  10. Zeng, C. et al. Th17 cells were recruited and accumulated in the cerebrospinal fluid and correlated with the poor prognosis of anti-NMDAR encephalitis. Acta Biochim. Biophys. Sin. (Shanghai). 50, 1266–1273 (2018).
  11. Golombeck, K. S. et al. Evidence of a pathogenic role for CD8 + T cells in anti-GABA B receptor limbic encephalitis. Neurol. Neuroimmunol. NeuroInflammation 3, 1–8 (2016).
  12. Dalmau, J. & Graus, F. Antibody-mediated encephalitis. N. Engl. J. Med. 378, 840–851 (2018).
  13. Shin, Y.-W. et al. Treatment strategies for autoimmune encephalitis. Ther. Adv. Neurol. Disord. 11, 1–19 (2018).

 

Images

Figure 1 created with BioRender

 

 

Introducing the IAES and PennNeuroKnow Partnership

IAES and PNK announce partnership in autoimmune encephalitis and neuroschience education

October 16-2019 | Carolyn Keating and Sarah Reitz

Hello AE Community!

 

Our names are Carolyn and Sarah, and we are happy to announce the partnership between IAES and our blog, PennNeuroKnow (PNK).  We are working with IAES to learn about topics that patients and families in the AE community have trouble understanding, in order to create handouts and blog posts that explain these issues in a way that’s easy to digest.  We’re excited to begin this alliance and to introduce our team to the AE community.

PNK is a blog we founded in early 2018 to dive into the complex field of neuroscience and simplify it so that anyone can understand.  Including the two of us, we have 6 writers creating weekly articles ranging from general topics like how the brain produces curiosity, to breaking down specific journal articles on subjects like how the bacteria in your gut may be linked to depression.  All of us are PhD students in the University of Pennsylvania’s Neuroscience Graduate Group who are committed to better communicating science.  We know that scientific studies are sometimes difficult to both access and understand, so we want to use our training as scientists to share our passion for neuroscience and make our field more accessible to everyone.

We were first introduced to IAES in July 2019, when Carolyn wrote about NMDAR encephalitis in a blog post called When Your Brain is on Fire.  IAES saw the post and shared it on their Facebook page, giving the article much greater reach than we normally experience.  The amount of positive feedback we have received from the AE community has been overwhelming, and we are truly grateful to have been able to help so many people understand the science behind the disease that has affected themselves or a loved one.  Now thanks to IAES President Tabitha Orth reaching out to us about forming a partnership, we are excited to produce more easy-to-read articles on complex topics important to the AE community.

All of our writers are looking forward to learning more about AE and the issues that are difficult for patients and families to grasp.  Already we are hard at work learning and writing about how AE relates to the immune system, memory loss, and FDG-PET scans, just to name a few topics.  We hope that we can use our strengths as neuroscientists to help translate complicated subjects and journal articles into something everyone can understand, and are excited to contribute to this wonderful community. We want to make sure we are writing about topics that are most important to you and your family members, so please do not hesitate to reach out to either Tabitha or us with topics you would like to learn more about!

Get In Touch with IAES

Get In Touch with PNK

E-mail Sarah and Carolyn Directly at PNK 

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

 

 

Become an Advocate by sharing your story. It may result in an 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 

Why the Zebra

 

Attending the Neurology and Psychiatry London Conference

July 24 | Dr. Daria Muir, IAES Medical Liaison,  and (stubborn) AE survivor

The long-awaited day has arrived – Finally. It’s Monday morning, very early in the morning, and I have a flight to catch to take me to London to attend the Converging Themes in Neurology and Psychiatry conference to be held at the Royal Society of Medicine in London.  I’ve been looking forward to attending and representing IAES for so months.  I am excited.

The aim of this meeting is to review the current clinical and basic research understanding of the diagnosis and management of a range of disorders, including Autoimmune Encephalitis, Epilepsy and Dementia, that are at the interface between neurology and psychiatry.

The first day was going to be about Autoimmune Encephalitis (mainly focus on anti- NMDAr and anti-LGI1 antibodies), seen from the perspective of two neurologists (Prof. Sarosh Irani and Prof. Christopher Butler), a psychiatrist (Prof. Belinda Lennox) and an immunologist (Prof. David Wraith) and followed by some in-depths of the neuroscience of space and time, wonderfully focused on the memory process of evolution and dissolution (Prof. Eleanor Maguire), the navigation systems after long-term memory consolidation ( Prof. Hugo Spiers) and the development of hippocampal-dependent memory in humans (Prof. Faraneh Vargha-Khadem).

Ever since I got AE I started to feel uncomfortable in crowded and busy places. Too much noise and lots of conversations at the same time makes me lose focus.  Brain-fog takes over and I am lost; (this literally happened at the end of the first day, when I took the wrong bus and ended up almost outside London in the middle of the night).

But arriving at the conference and seeing the presenters and the attendants, most of them eminent names in neurology and psychiatry in the U.K., leading doctors in the field who provide care for autoimmune encephalitis patients, gave me strength to gather all my energy to attend and get the most value I could from the experience!

autoimmune encephalitis

I’ll share more in a follow up blog with a more detailed story, with slides and answers to questions.  (The AE session was the most debated one!), but now that I have returned home, I wanted to give you the “fresh flavors”, in terms of objectives that were set and reached by the speakers and take home messages:

  • NMDAR-dysfunction is the hallmark of NMDAR- antibody encephalitis and hence NMDAR antibodies
  • There are several lines of evidence (clinical evidence, immunological/epitope data, electrophysiological modeling and PET imaging)
  • Down regulation (a decrease in the number of target cells in the brain caused by NMDAR) of NMDAR is key and sufficient for disease!
  • LGI1 AE has highly distinctive clinical phenotypes
  • The disease neurobiology and the underlying immunology remain poorly understood
  • mAbs (monoclonal antibodies) can offer novel insights in terms of tools and therapies and immunology
  • Autoimmune limbic encephalitis leads to acute cognitive and behavioral disruption
  • There are persistent deficits in anterograde and remote memory after treatment
  • Hippocampal atrophy is associated with network-wide structural and functional changes
  • These changes explain memory deficits better than hippocampal volumes
  • Novel disorder of pathological tearfulness in AE requires further study
  • Limbic encephalitis – a “neurological” neuropsychiatric disorder
  • There is an overlap in clinical phenotype between encephalitis and schizophrenia
  • 5-9% of patients with psychoses have antibodies against a neuronal cell surface target
  • Patients with psychoses and antibodies have an abrupt onset to illness, but do not have a distinct clinical phenotype
  • Neurology and psychiatry need to combine forces!
  • The future in immunotherapy: proteins can be replaced with apitopes, representing T cell epitopes, for effective desensitization of cells causing allergy, autoimmunity and other unwanted immune responses. Apitope therapy is already proven in a range of immune pathology. Apitope immunotherapy is a targeted approach treating the underlying disease pathology by selectively reinstating immune tolerance rather than global immune suppression. (Apitope means antigen targeting epitope).

I can’t help but reinstate one of the key messages about the management of diagnosis and treatment of Autoimmune Encephalitis:

-Neurology and psychiatry need to combine forces!

A big “Thank you” and “Congratulations” to the amazing speakers and great organizers!

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

Meet the IAES Admins ~ Series Introducing Mari Wagner Davis, RN and Nicole Bernard Volc

Meet the IAES Admins ~ Series Introducing Mari Wagner Davis, RN and Nicole Bernard Volc

January 17, 2019 | Mari Wagner Davis, RN, Nicole Bernard Vold

 

Mari Davis, RN

Hello, my name is Mari Davis. I am a 55-year-old with 30 years of nursing experience.  I had never heard of Autoimmune Encephalitis until I was diagnosed 2 years ago after having seizures at work. Since then it has been a journey of rehab, seizures, treatments and medications.

The treatments I have undergone for my autoimmune encephalitis have been plasmapheresis, steroids and IVIG.  I had a 3-week inpatient rehab stay until I was able to walk without a walker, I then went to a day rehab program that included Physical Therapy, Speech therapy for cognitive issues and vocational counseling. After that I did a cognitive medicine rehab computer program which was terribly boring. Now I do luminosity every day.  I am currently on 3 seizure medications to control my seizures. 

I got a second opinion at Northwestern Medicine in Chicago with a doctor listed on the IAES Doctor’s list on their website.   She did not recommend any additional treatment as of now. I have good control of my seizures and I had to take a driver’s test again before I could drive.

Prior to coming down with autoimmune encephalitis, I worked as a Nurse Case Manager.  I utilize my knowledge of resources and experience with the medical system in my volunteer role with IAES.  It is my hope that my contribution will be helpful to others as we move ahead in this journey together. I have found International Autoimmune Encephalitis Society’s website to be very helpful to me personally and the educational support group invaluable.  I look forward to assisting others as they move ahead on their own journey with AE and contributing my skills and knowledge to IAES by expanding the resource section on the website in 2019.

I enjoy talking with and assisting IAES members and I also do volunteer work at a local hospital training volunteers who work on the floors.  I try to clean, cook – do something normal each day. My biggest adjustment has been not working and dealing with my feelings around that. My biggest frustration has been the loss of memories from 2-3 years before I got sick along with a sketchy memory the last 2 years.  Ask me about something that happened 20 years ago and I’m fine.  I am grateful for the opportunity to share my education and experience as it allows me to be able to feel a personal sense of satisfaction that I can still make a valuable contribute despite AE and how it has changed my life.


Nicole Bernard Volc

Nicole is a Health Sciences educator and has autoimmune encephalitis. She holds an undergraduate degree in Genetics, a Master of Medical Science and a Master of Education and has been teaching for 16 years.

My name is Nicole and I have been diagnosed with Hashimoto encephalopathy since 2005. I have received numerous types of treatments but IVIg seems to be the one that stabilizes me best. Even then, its a seven-week cycle of returning symptoms. In my professional life I taught human anatomy and physiology at a major Canadian university. I am now on long term disability and focusing on my family. I have five kids, two biological who were born after diagnosis. I enjoy the IAES website and have found it a treasure trove of information and support. I assist others on their journey with this disease through my experience as a patient and educational background.


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

Meet the IAES Admins ~ Series Introducing Jo-Anne Villar

Meet the IAES Admins ~ Series Introducing Jo-Anne Villar

November 6, 2018 | Jo-Anne Villar

 

Jo-Anne Villar with her daughter Jordan

Each month the IAES Blog is featuring one of our volunteer Administrators working in the IAES Educational Facebook Support Group.  The educational support forum is specifically designed for people who have received a confirmed diagnosis of Autoimmune Encephalitis, their loved ones and caregivers.  It is the only educational support group of its kind.  Members receive one on one support, educational training in AE based on the research published in the field by top experts, advocacy in addressing their specific challenges or road blocks to reach the best treatment plan and outcome, emotional and personal support by members of our ‘AE Family’ who walk this walk.

Each Blog in the series will introduce you to one of our Admins and tell you a little bit about what they do in the group and what they do and are responsible for “behind the scenes”.  Some of our Admins work full time and contribute 7 days a week while others donate their time and talents a few hours a day or as they can.  The roles they hold are diverse from talking to each individual who asks to join the support group to answering posted questions, helping members understand or locate research on a specific topic, working with insurance coverage/financial discounted programs/denials of treatment to crisis management in varying situations. Some take on additional hats writing and editing blogs and THE HERD newsletter where we bring you up to date news.  An Admin may assist members privately which can involve a team of Admin being assigned to a case that can at times run weeks or months until resolved.  Each Admin brings their own talents and viewpoints to the team.  If you think you would like to become an admin e-mail admin@autoimmuneencephalitis.net to request an application.

This month we are spotlighting Jo-Anne Villar


I am a mom of a now 15 year old daughter Jordan, who has been battling Autoimmune Encephalitis for at least 3 years. I think I’m like most moms of children with AE, we joined IAES group, to be able to learn, share, and connect with others. We want to feel that we are not alone. I joined IAES around 2015 in my frantic search to figure out for myself what was happening to my daughter.

I now volunteer for IAES helping guide and comfort members that are dealing with AE themselves or caring for someone who is. I share research pertaining to their circumstance, or my experience from my daughter’s journey, or comfort and try to help them find strength.

 

I am a mom to 5 kids that my husband and I are raising. We have a full house with his two sons (11 and 17), my son (16)and daughter (15) and our 8 year old daughter. I’m a wife to a dedicated husband for over a year now, but we have lived as a family for 11 years. We have a very busy household like most with 7 members. We all help care for each other, especially caring for Jordan. To my amazement, we developed a protocol when she has an emergency. I realized one day that they all know what to do in an emergency. When a seizure occurs one will alert, another turn her to her side and keep her safe, another will get her medicine bag, another will time, another will have a phone ready to call 911. Even my 8 year old has been helping since she was six. I am Business Office Manager and Insurance Biller for a skilled nursing and rehab facility. I am determined that every patient should understand their condition, their treatment, and their insurance coverage. I advice patients of the services they are getting in the nursing home and explain the extent of their coverage and their financial responsibility. I also communicate with patient insurance companies to make sure that the covered services we provide are authorized and paid for. I care that our patients get the services they need. I care that our patients know what their insurance will cover. I care that the insurance will pay for what they authorize.

I have been a patient advocate for over 20 years. It has definitely helped me advocate for my daughter and my family. My profession has given me the strength and experience to be a case manager for my family. I was a case manager and caregiver for my mother in law when she battled breast cancer. I was a case manager and caregiver for my mother when she battled leiomyosarcoma. Now, I am my daughter’s caregiver and case manager. I truly believe that our experiences lead us to become who we are meant to be.

 Jordan feeling at her better 6 weeks after Rituxan treatment.  She did have a seizure 2 days before this picture was taken, but then was seizure free for 3 months.  Jordan has been battling her AE for 3 years. 


Donate to Support IAES and our Life Saving Mission


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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. Tax ID# 81-3752344 Donations raised directly supports patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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