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

 

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.

Meet the IAES Admins ~ Series

Meet the IAES Admins ~ Series

 

July 5, 2018 | Gene Desotell, BA Administration of Justice and Sociology

Co-founders Gene Desotell and Tabitha Andrews Orth

Each month the IAES Blog will be 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 view points 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 Gene Desotell Co-founder and Treasurer.


My wife was diagnosed in 2009 with Autoimmune encephalitis. Before that we went from doctor to doctor looking for a diagnosis. I read a lot on the National Institutes for Health medical research. Before Facebook, there were yahoo groups.  I would convey what I had learned from my reading to members there. As time went on, I watched as research began to unfold in this new neurological sub-specialty that was emerging: Autoimmune Neurology. I focused my reading on Communiques and Reviews written by key researchers in the field of Autoimmune Encephalitis tracking and absorbing new findings in each step of the evolution of discovery in the field with a key interest in the most accurate way to diagnosis and treatment Autoimmune Encephalitis.

Several years ago, Anji Hogan Fesler and I both had Facebook support sites where we each helped people with this disease. We had collaborated for years around our advocacy efforts which evolved into a strong working relationship where we were advancing each other’s efforts in our two forums.  Anji’s forum was centered on Social Services support with emotional support and the sharing of experiences by people with the diagnosis or those where the diagnosis was being considered.  She drew on her many years as a Social Worker in her advocacy. My Facebook forum was centered on what research was uncovering and how it was advancing the understanding of AE by conducting an educational group centered on what researchers recommended.  To go back in time, less than 200 people had been diagnosed with anti-NMDAr (the most common antibody) at this time.  100 research papers were published that year which was more than the previous 10 years combined.  Understanding was being advanced and very few doctors knew how to diagnose and treat so misdiagnosis and misinformation about AE was rampant.  The understanding of autoimmune encephalitis was just emerging…. It was the beginning of patients not being automatically diagnosed with a psychiatric illness and committed.  It was the beginning of an accurate medical neurological cause of the symptoms being identified.  It was the Dawn of Autoimmune Encephalitis.

When we evaluated the landscape of what was available to patients and families affected by autoimmune encephalitis, we realized that while there were organizations who were increasing awareness  and one  with a focus on advancing research which assisted the public for the first time with some general and helpful information about AE.  There were no resources that  provided education and accurate answers to people who had this disease. Nothing available that supported patients and Families or provided advocacy in crisis or in the vast areas of need to people touched by AE. We focused on the question:  How can one be their own advocate if they lack the basic knowledge of the disease and treatment and the support required to deal with the many challenges on their journey? The answer was: Education is Power.  Lack of education about AE was interwoven in each element of struggle the AE community was having. 

 

At this point in the evolution of what was to become International Autoimmune Encephalitis Society, Tabitha Orth had joined us as a patient advocate and was acting as a volunteer Administrator in both of our Facebook forums.  By this time, the three of us had been called upon to help AE patients and families in a variety of crisis situations. Demand for services was growing exponentially and people in crisis were turning to us for help because there were no services available to them and there was a huge lack of understanding and recognition of AE in the medical community.  We saw the additional need to get proper care in a world where most doctors have never heard of this disease.  Assistance was needed to get patients to those locations where a good solid diagnosis could be established. Help in dealing with an insurance industry in the U.S.A., who also knew very little of the disease and would reject claims. The list of what was most crucially needed was directly associated with the lack of resources available to patients in the AE community and the key reasons patients and families were thrown into crisis and life threatening situations.

It became clear to all three of us that in order to serve the public and address this epidemic crisis we were baring witness to and knee deep in addressing daily, we should incorporate as a non-profit.  Anji and I closed our Facebook sites and reopened under the new name of the non-profit in September of 2016.  We have developed methods, tools and strategies to assist people in becoming strong advocates and self-advocates.  By implementing fun visuals and memes that share pieces of information, a member can use these as cue cards or building blocks to build a strong and accurate understanding of the disease, treatments, diagnosis process and advance to an even deeper understanding of the process of the disease to become a vital member of their medical team and prevail with the best possible outcome.  Video presentations on every aspect of the disease is on our website. Podcast interviews with key researchers are available so people don’t have to weigh through the difficult to read and understand research.  We have focused on ‘user friendly’ methods addressing the need of educating members who have cognitive deficits due to the illness through only accurate current research. We continue to strive to expand that avenue in developing more services that can lead to what we wish for all members: Developing them to be a strong and educated advocate, providing access to skilled care with discounted travel and accommodations, getting claims processed and overturning insurance denials. 

International Autoimmune Encephalitis Society continues to grow. The IAES Blogs began late 2017 and in 2018 we launched the organization’s bi-monthly publication THE HERD.   The IAES website has been heralded by several of the top research experts in the field worldwide.  Our public Facebook page reaches over 10,000 interested viewers a week on average.  Medical students, Interns and Residence utilize the IAES website to further their studies, prepare presentations, and treat their patients. Established Neurologist have written us to let us know that the website has advanced their patient care.  The IAES educational Facebook support forum is one of the critical services the organization provides. It allows us to provide a ‘classroom’ where accurate information can be shared,  a place where  one on one support and problem solving can occur, and a place where all of us can come together and not have to explain ourselves as we are among our ‘AE Family’ and people who walk to walk and understand in ways no one else possibly can.  As members become stronger advocates, they help other members become stronger advocates.  The difficult challenges around having AE are addressed daily and daily we are pleased to see members overcome road blocks that stood in their way. Whether that be over turning an insurance denial, getting to an expert via Angel flights, or simply helping each other through shared experiences and accurate information.  

My role today is Administrative oversight. I take care of taxes for IAES, the incorporation up dates in the state of Delaware, contracting with companies who provide us support such as credit card processors and internet hosting, Oversight of building and updating our web site, Facebook site, as well as the day to day answers on the website through e-mail correspondence.  All three Co-founders of IAES, Tabitha, Anji and I, have been involved from envisioning a dream, the setting up of the initial infrastructure and expansions. As Treasurer, I keep our operating expenses very low so as to maximize the help to the member and expand our growth.


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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