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A Mother’s Wish for a Mighty Miracle’s 7th Birthday

A Mother’s Wish for a Mighty Miracle’s 7th Birthday


November 24, 2022 | By Janine Samuela-Carasus

Introduction from the IAES Blog Team:

As we wrap up caregiver awareness month and in the spirit of this season’s giving of thanks, the staff at IAES wish to share with you this beautiful story of hope and the true power of those that care for us the most. Each AE Warrior is here today because of those that care for and love us. We are thankful beyond words. We hope you find this story as inspirational as we have, and we truly hope you all have a wonderful Thanksgiving!

To read more of Zoe’s story and her family please enjoy the first blog in this AE journey: https://autoimmune-encephalitis.org/never-give-up-miracles-happen-every-day/

 

—–

My name Janine Samuela-Carasus. I am 29 years old and from the Philippines.

Five years ago, in the middle of August 2017, our toddler that was almost two years old was diagnosed with anti-NMDA receptor Encephalitis.

We were stuck in a pediatric ICU unit for three weeks with Zoe and then, literally, lived in the hospital for the longest two months of our lives. As you can imagine, hundreds of tests and procedures were done every single day to try and figure out what was happening to our precious little girl. Our hearts were broken by every single negative result. No one knew what was happening to our girl. She seemed to be getting sicker and sicker each day.

Bills began piling up. All we understood was that her condition continued to worsen each day until she was not responding anymore. But with all this negativity, there was never a moment, a day, or a week that I thought of giving in and giving up. Never did a second go by that we lost hope that things would get better.  With constant prayer, the help of the Lord, and the vigilance of our brilliant doctors, we kept hope alive.

Eventually, we were able to bring Zoe home although she was in a non-responsive vegetative state. We had no idea or any medical assurance that she would recover and regain her strength again and be the precious girl we knew and loved.

For me, it was a mix of emotions. I was happy we were finally home and terrified of what the future would bring all at the same time. I worried if I would be strong enough for Zoe and if I would be able to help her. I did know one thing for certain, even if it took her forever to recover, I would be there. I knew even if it meant sacrificing my own life and personal dreams, I would be there. And I did. Never did I leave her side, nor did I sleep away from her even for a night. I, religiously, made her blended food and fed her via a feeding tube for months. I took her to doctor’s appointments, therapy sessions, and every appointment that was necessary. I made sure Zoe was and felt loved every minute of every day and spoke to her all the time as if nothing was wrong.

All our prayers were answered. Zoe’s recovery was a long slow two-year road that we all traveled together. We watched her slowly improve, we cried with her when the therapy was hard until she got to the point to be able to face the world again! 

To date, our daughter is back to being her best self. Her gross motor and cognitive skills are significantly improved. She has been able to overcome her stranger anxiety and started attending formal school. We are very excited for her to spread her wings and begin to fly. She will be bringing with her the scars of a well-fought past showing how strong and resilient she is. Our family will be right by her side!

Our fight and Zoe’s fight do not end here. AE could happen anytime in her life again. It can happen to anyone. I will always be proud of our story of faith, strength, and love. We plan to always fight for AE awareness so everyone can get diagnosed quicker and not have to go thru all the pain we had as a result of this terrible disease.

Zoe turns seven years old this month. I want Zoe to read and understand our story, her story. Zoe may not be able to remember all aspects of her AE journey but thru this story, I hope she understands, in her heart, that we, as a family, are one. And we will conquer everything that comes our way!!  

 

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

Tabitha Orth 300x218 - A Mother’s Wish for a Mighty Miracle’s 7th BirthdayOn 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.

guidestar platinum logo 300x300 1 e1605914935941 - A Mother’s Wish for a Mighty Miracle’s 7th Birthday

 

 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. 

Trivia Playing cards 3 FB 500x419 - A Mother’s Wish for a Mighty Miracle’s 7th Birthday

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.

 

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Caregiver Honorable Mention

Caregiver Honorable Mention


November 8, 2022 | By Mari Davis

Introduction from the IAES Blog Team:

.For all Autoimmune Encephalitis warriors, it is our caregivers, friends, and loved ones we rely on every single day in our AE journey. We rely on these amazing people for everything from giving words of encouragement, to a ride to doctor’s appointments, to help us relearn how to walk and talk, and simply be there by our side. We are honored and proud to add another one of these amazing sentinels to our list of Honorable Caregivers.

 —–

I, Mari Davis, would love to nominate my husband, Geoff Davis.

Geoff has been my rock throughout the ups, downs and all the shenanigans called Autoimmune Encephalitis. I was at work when suddenly I had seizures. No warning, no nothing. I was admitted to the intensive care unit and was intubated. Geoff was there. He had no idea what was happening, but he never wavered and was there.  He had to call our college-age children and my parents to let them know that I was sick. I was sick, and he had to tell them he had no idea what was happening. He was at my side each night during my admission. He has been my cheerleader and a driving force in my efforts to become as functional as possible. In the last 5 years he has cried with me, laughed with me, and danced with me.

When it became apparent that I wouldn’t be able to return to a job I loved he cried with me. He has laughed with me while I’ve creatively tried to find elusive words. He has danced with me each morning before day rehab just to bring a smile to my face. Even when I know he was nervous about how I would do, he never let me know and he was there.

When I drove to Houston with our daughter and flew back on my own, I know he was scared, but he never let me know. Geoff simply offered support and was there. I know with Geoff, I can ask any question, no matter how crazy and he will answer it truthfully, even if the truth is difficult. He will be there. He has the patience of a saint. At times I have needed as much saintliness as possible. He had no idea how I would do long-term. He had no idea if the person I was before would be that person going forward. He was just glad I was here. And he was there.

I would also like to nominate his mother Rubye Neely for raising such a great man. Thank you, Rubye, for raising Geoff to be the person he is and the person that I know will always be there.

 

MariDavis - Caregiver Honorable Mention

 

Mari Davis, RN, ACM

Support Services Coordinator

International Autoimmune Encephalitis Society

 

 

 

 

 

 

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

Tabitha Orth 300x218 - Caregiver Honorable MentionOn 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.

guidestar platinum logo 300x300 1 e1605914935941 - Caregiver Honorable Mention

 

 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. 

Trivia Playing cards 3 FB 500x419 - Caregiver Honorable Mention

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.  

AE Warrior Store 300x200 - Caregiver Honorable Mention 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

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

——-

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. 

Angie Fitch 3 n 281x500 - Continuing My Way Up The Slippery Slope: A Poem

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

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.

guidestar platinum logo 300x300 1 e1605914935941 - Continuing My Way Up The Slippery Slope: A Poem

 

 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. 

Trivia Playing cards 3 FB 500x419 - Continuing My Way Up The Slippery Slope: A Poem

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.  

AE Warrior Store 300x200 - Continuing My Way Up The Slippery Slope: A Poem 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

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. 

Reyna Felix 11 - My Journey to Raising Awareness for Anti-NMDAr Autoimmune EncephalitisMy 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.

Reyna Felix 12 - My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

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.

Reyna Felix 8 - My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

 

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

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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. 

Trivia Playing cards 3 FB 500x419 - My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis

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.  

AE Warrior Store 300x200 - My Journey to Raising Awareness for Anti-NMDAr Autoimmune Encephalitis 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

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

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

August 10, 2022

Tabitha Orth 300x218 - Points of Light Award: A beacon of light, love and hope for all of us!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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Tabitha Orth 300x218 - Points of Light Award: A beacon of light, love and hope for all of us!

 

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.

 

guidestar platinum logo 300x300 1 e1605914935941 - Points of Light Award: A beacon of light, love and hope for all of us!

 

 

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.  Trivia Playing cards 3 FB 500x419 - Points of Light Award: A beacon of light, love and hope for all of us! 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.   AE Warrior Store 300x200 - Points of Light Award: A beacon of light, love and hope for all of us! 

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

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis
Independence Day!

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! 

Tabitha Orth 300x218 - Independence Day!

 

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.

 

guidestar platinum logo 300x300 1 e1605914935941 - Independence Day!

 

 

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.  Trivia Playing cards 3 FB 500x419 - Independence Day! 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.   AE Warrior Store 300x200 - Independence Day! 

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

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis
A Happy Ending for Surprise Diagnosis for One Doctor by Another Doctor from a Land Far Far Away

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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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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Jackie Stebbins’ Book Release – Unwillable

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.

282611734 819445159443008 7686218785706316893 n - Jackie Stebbins' Book Release - UnwillableMy 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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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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Psychosis or Something More? A Family’s Search for Answers

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. 

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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.

 

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The Darkness of a Brain on Fire

The Darkness of a Brain on Fire

April 27, 2022 | By Chelsea Wagner

 

CW 3516 375x500 - The Darkness of a Brain on FireNumbers, 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.

CW 7606 375x500 - The Darkness of a Brain on FireEven 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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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.

 

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

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.

wherearemypillows squishmallows 500x500 - What happens when your autoimmune encephalitis treatments aren't working?

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.

wherearemypillows treatment chair 500x375 - What happens when your autoimmune encephalitis treatments aren't working?

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.

wherearemypillows treatment 500x375 - What happens when your autoimmune encephalitis treatments aren't working?

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 bio

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

 

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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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Through the Eyes of Mom

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.

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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.

 

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Falling through the looking glass…

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. 

IMG 5128 225x300 - Falling through the looking glass...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. 

IMG 5127 225x300 - Falling through the looking glass...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 😊! 

IMG 5135 300x225 - Falling through the looking glass...

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. 

IMG 4404 225x300 - Falling through the looking glass...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 ❤️. 

IMG 5129 300x225 - Falling through the looking glass...

August 2021, me, mom, and stepsister Kaitlyn 

 

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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.

 

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Letters to Our Before AE Selves, Part II

Letters to Our Before AE Selves, Part II

February 22, 2022 | AE Awareness Month Special Series

Introduction from the IAES Blog Team:

Welcome to Part II of the IAES Blog series for AE Awareness month 2022; Letters to Our Before AE Selves. We are privileged to present the following heartfelt letters written by AE patients (AE Warriors) and caregivers to themselves, or the loved one they care for.

The following compilation of letters expresses the thoughts and feelings we would write to our ‘Before Autoimmune Encephalitis’ selves. They express what we would want ourselves to know, or our loved ones to know, if we could have been given a foreshadowing of how our lives would be pivoted on its axis due to autoimmune encephalitis.

Some letters are from our loved ones to us, and some are from us to ourselves. Long or short, happy or sad, all are heartfelt and are sure to lift your spirits. We hope you thoroughly enjoy Part II of this two-part series.

~

The first letter we share is from IAES member and AE Warrior Angie Fitch to herself:

Dear Angie,

You are so blessed! Get out there and walk your dogs more because there may come a day you might not be able to.  Enjoy time with your friends, meeting new people and going outside because a day may come that you are barely able to get off the couch and become isolated. Take pride in being able to multitask, even if that only means being able to walk and do something else at the same time. Go for that run because one day you may give anything to be able to do it, so do it!

Don’t take for granted the ability to speak the words you intend to say because one day those words could leave your mind. Talk about and cherish memories because one day they may not exist anymore. Enjoy the sounds of the world around you as one day those very sounds may cause you extreme pain and anxiety.

Don’t ever take for granted driving a car, cooking dinner, swinging a golf club, having a conversation, going to the grocery store, walking, talking, breathing, or sleeping because these things are not a given for everyone. Things come easily for you, and you learn fast. You’re a hard worker, very active, social, and fun. Cherish these qualities as everything can change in a moment and the ‘simple’ things you take for granted today, may be gone tomorrow.

Finally, never lose hope no matter what life throws at you. Make sure to count your blessings every day, even when the world comes crashing down on you. Always count your blessings; because there are so many, and those blessings are what will help you to never lose your strength, hope and happiness. No matter what life takes from you, it can’t take that.

Love, Angie

~

The second letter is from Kimberly Sorin to her grandson Colban Sorin:

Dear Colban,

You came to live with me a confused and sad little boy. Eventually you became vibrant, funny, and always smiling and laughing. Over the years, as you get older, many things will happen that will shape you into the man you’re to become. There may be days when you feel like there’s no reason to smile. There may be lots of tears and anger, moments may be forgotten. These things may come back to you but in a different manner. Don’t lose your sense of self, keep fighting…and know that I will always be right there by your side.

Always, love you to the moon and back,

Grandma

~

The third letter is from IAES member and AE Warrior Ryann Henn to herself:

Dear Ryann,

Things right now are going okay, but there will be answers to questions you had about yourself and the way you have been acting and feeling. You need to know there are so many people out there that care and love you more than you ever will know and expect. Everything will be okay. I know you are scared about the future, but the people that love you are here to guide you. They will never leave your side. You will feel love like you never have before, and it will inspire you to work hard in recovering. Don’t lose touch with yourself and what you are most compassionate about, animals, people, and creativity. And take it easy on yourself, it’s okay to take a nap.

With lots of love, Ryann

~

The fourth letter is from IAES member, IAES Chief-Resilience Officer and AE Warrior Tessa McKenzie to herself:

Self,

First, let me assure you, you’re not crazy.  God is with you and you will feel okay again.

You are the 1 in 100,000 in this “boot camp for the soul” called autoimmune encephalitis. 

Doctors can’t diagnose you right now and loved ones don’t recognize you, but your brain is inflamed and it’s not your fault. 

There is a lot that doesn’t make sense right now.  When your soul is weary, and God is nowhere to be found, know he’s still there and keeps his promises.  When prescribed medications don’t work, know the right ones will eventually provide respite to your exhausted body.

Your life will go on past this experience – the sleepless 60 days, disorientation, panic, visual impairment, tachycardia, and memory loss…

And one day, you won’t view this as much of a curse as a unique gift to pay forward in empathy for those you feel alone, suffer, and are misunderstood. 

Above all, remember, “all things come together for the good of those who love God (Romans 8:28).”

Love,

Me

~

The final letter is from IAES member, AE Warrior and blog editor Jeri Gore to herself:

Dear Jeri,

Wow! Where do I even begin? Sometimes I feel like I want to write you a very long letter and sometimes it is short and sweet. I suppose today it falls somewhere in between.

First of all, Jer, you always like things black and white. You like the lines of life to be clear, precise, and not muddled. Well, Chica, if nothing else, the next few years will show you that this beautiful life you live is anything but black and white and the lines are muddled in a wonderful array of color and emotion. You may think that happenings in your past were tough or trying but, in all actuality, they set you up for what has become the most amazing journey you have taken to date. You will see confusion on the faces of your loved ones, you will feel pain and sadness in their eyes, and you will want with all your heart to take it from them and carry it yourself. You will learn the meaning of love like you have never known it to exist. You will see your life and the lives of others transformed by an illness so new to so many. Above all, Jer, you will know the meaning of the word grateful on many levels. You will be grateful for your past and your present because it has brought you to this place and to these people that have become a family of Warriors like you never knew existed.

Love always, Jeri

 

 

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guidestar platinum logo 300x300 1 e1605914935941 - Letters to Our Before AE Selves, Part II         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.  Trivia Playing cards 3 FB 500x419 - Letters to Our Before AE Selves, Part II 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.   AE Warrior Store 300x200 - Letters to Our Before AE Selves, Part II 

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

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Letters to Our Before AE Selves, Part II

Letters to Our Before AE Selves

February 9, 2022 | AE Awareness Month Special Series

Introduction from the IAES Blog Team:

In celebration of AE Awareness Month, we are pleased to bring you a two-part IAES Blog series of letters written by AE patients (AE Warriors) and caregivers.

The following compilation of letters expresses the thoughts and feeling we would write to our ‘Before Autoimmune Encephalitis’ selves. They express what we would want ourselves to know, or our loved ones or caregivers to know, if we could have been given a foreshadowing of how our lives would be pivoted on its axis due to Autoimmune Encephalitis.

Some letters are from our loved ones to us, and some are from us to ourselves. Long or short, happy or sad, all are heartfelt and are sure to lift your spirits. We hope you thoroughly enjoy Part 1 of this two-part series.

~

 

The first letter is from IAES member & AE Warrior Kerry Jones to himself:

Dear Kerry,

You’re about to begin a journey that you’d rather not take. It will be rough, it will be challenging, and it will change you forever. But count your blessings, you’re going to be one of the lucky ones. Many of your memories will be gone, but that will open the door for new memories. You will reconnect with your estranged son and become a grandfather to his son. And all the bonds of love in your family will be strengthened. But most of all, learn to cherish every moment and take nothing for granted. Love and share your newfound strength with those less fortunate than you.

Love, Kerry

~

 

The second letter is from IAES President and Founder Tabitha Orth to herself:

You Have Entered: The Twilight Zone

It was December 2013, when I was re-arranging my sock drawer, that I came upon a sealed envelope with the words “Read Me. From Me. February 2022” written on it. The envelop appeared to be crisp and new as if it had just been placed there.

This is strange, I thought. That is my handwriting, but I don’t remember writing this. What the heck is going on? I thought, as I lifted it up with a shaky hand. I looked around the room, as if for answers, and felt like I was in the twilight zone. I could even imagine hearing the music from the TV series.  I sat down on the edge of my bed and carefully opened the letter.

Hi. It’s Me.

I know.  This is weird. Don’t freak out. I recognize my own writing. Yes. Take a deep breath.

I don’t have much time. Time, now there’s a story. Bottom line, it’s not linear.

I’ve been given a chance to punch through time to leave this for Me in 2013. Look, I need to tell Me something. I’m sorry I must tell Me this, but I need to know it NOW. It will help. At this point in my life, I think I’ve navigated the hardest challenges that life has offered. I’ve had much bigger long-term life challenges than the average person and I think the hardest part is over.  I’m really sorry. The hardest part is yet to come.

Now, I know hearing this from future Me is shocking, but I’m going to go through a frightfully horrific period in my life. It can’t be stopped. The wheels are already in motion. I’m sorry. Trust this is real and that it is true. You will know it is true in the not-too-distant future.

What I want you to know is that I get through it. It is now 8 years in the future, and I survived. Not only that. I thrived. My eyes are wide open to what is most important in my life. I’ve learned that I can love deeper, give more of myself, appreciate all the little things I took for granted that each day brought. The garden, the seasons, being kind to strangers, going out of my way to do or say something kind. Appreciating life. Enjoying every moment of life. I came through a very difficult and scary time and overcame adversity. Jim and Matthew are thriving and happy. Life is good. It’s better than good. Hold this knowledge in your heart beginning right now.

Now, put this back under the socks. I will find it again several years from today. I would have forgotten about it when I find it again, but I will remember its message when I recognize what it is. I’ll have some memory problems when I find it again, but I’m great. No worries. I’m ok. 

After all these years, I can’t explain this magic. I have continued to be baffled by it. I can only think that miracles happen. Magic is real. Magic is the power of love. Through love anything is possible. That’s all I’ve been able to work out so far. Maybe time will tell more.

~

 

The third letter is from IAES member & AE Warrior Laura Melcher to herself:

Dear Laura,

Life isn’t easy, you work and look after your kids and do it without help from anyone.  Enjoy this life you have now, because after Autoimmune Encephalitis, everything changes. This life is everything you wanted. You and the kids have everything you need. You are fit, healthy and able to provide.

One day you won’t be able to go back to that job you go to every day, and you will miss it SO MUCH.

Everything you took for granted will be hard. How do you pay the bills alone when you are medically unable to work? You can stand for 9 hours a day now, THAT is a blessing when you can’t stand more than 10 minutes. When everything you took for granted is hard, walking, standing, household chores, reading an email, taking a phone call, being a Mum, showering, just existing.

You think life is hard now, NOW you are blessed.

Enjoy it while you can.

Kind regards, Laura

~

The fourth Letter is from IAES member & AE Warrior Celia Fermon to herself:

To my old me,

I want to tell you that sometimes the road in life gets difficult. It can be exhausting. You have learned by now that you have the capacity to go thru all the journeys. You will find that in the worst moments you will always have an angel by your side. Do not be afraid. You will, also, receive a little angel that has four furry paws that will always be watching you and taking care of you. Do not worry for you will learn that in your weakness is your strength.

Love, Celia

~

The Fifth letter is from IAES member and AE Warrior Sharon Bassell to herself:

Dear Sharon,

It’s me! The YOU before AE.

It’s been nearly 7 years since that vile antibody entered your system and gave you AE.

I’ve watched you stumble around in the dark for so many years looking for answers, cures, and hope….and where was l?

I wish, I wish I could have talked to you before it all happened.

I may have been able to save you so many tears, anger, confusion and maybe made acceptance and progress happen sooner!

 

BUT! Better late than never!

I’m here now, and here is what I wished you’d known before.

* NOBODY could have predicted whether you would have ever been cured.

* NOBODY could ever have predicted how much progress you would have made.

You have an aggressive, angry, strong, resilient antibody – I bet nobody told you     

that!

 

* Your life will never be the same again, or even anything resembling it – I bet

nobody told you that!

 

* Remember that career in Nursing, that was the very core of your being?

The role that you were born to do.

The thing that you dedicated 44 years of your life.

Well! It’ll ALL be gone in ONE DAY!

The day you were diagnosed with AE!

 

* You’ll never be able to drive a car again, your clean license of 42 years- another

thing that’ll be gone at a stroke of a pen!

 

You had the right to know that things were going to get a lot worse before they got better….

 

You needed to know about neurofatigue, flooding, visual deficits, memory loss

(Both short- and long-term memory).

Loss of certain “Life Skills “……remember how good you were with all things before IT?

Well, not anymore!

I should have told you about the personality changes, mood swings, impulsivity,

the tears, lack of sleep, multitasking difficulties, and problems with processing.

 

I’m not painting a very pretty picture here I know, but, I believe, knowledge is power!!!

I wish you had even a third of this information before AE got its grip on you!

Your recovery and acceptance would have been so much smoother and quicker.

I know that your medical specialists will focus on many different types of drugs, but they didn’t tell you that you will likely have to reschedule the rest of your life around the administration of these medications, just to keep you from relapsing!

Whilst the right specialist and medication treatment is pivotal, I bet they didn’t tell you that you needed to get into a Brain Injury Rehabilitation Program as soon as possible, did they?

BRAIN INJURY REHABILITATION is what will turn your life around! I wish, I wish I could have told you way back then.

These professionals will focus on YOU as an individual, they’re experts, they’re educators, they’re facilitators, they’re game changers!!!

I also wanted to tell you to link up with a support group like the IAES, you need to make your life easier, and learn from people who’ve “been there “……..

I see you now, and I’m so sorry that your treating doctors didn’t look “outside the box “and suggest adjunct services. Hopefully, this Awareness Project will enlighten many healthcare professionals to have the discussion in the beginning!

I see you know, you’ve done so well, I’m proud of you. You’ve managed without me……but how I wish I could have written this letter to you …. myself “Before AE”

I love you

~

The sixth letter is from IAES member, IAES staff member and mighty AE Warrior Mari Wagner Davis to herself:

Dear Mari,

You don’t know this yet, but you are going to find out in the next 5 years what you are truly made of. There will be times when you want to give up, give in, lay down. There will be times where you will be tested, when you will cry, tell your husband to let you go, but you may already know this, there happens to be a lot of fight and feisty ignorance in you. You will use what you have practiced as a nurse for the last 30 years and complain about every small thing that you find “wrong”. What you will later learn is that a part of it is your brain injury, as well as your anger that this disease has brought and that your injured brain will just not let go of. And no, you are not always wrong, sometimes, they are not practicing up to your standard, you will just have to learn to live with that. What you will also later learn is that life is too short and that there is almost always something to find good in most situations and people. (oh, there may be exceptions) but for the most part you will see the good. You missed seeing that in the past, but you won’t after Autoimmune Encephalitis

You, also, do not yet know that perhaps you learned all those case management skills and ways of finding resources not only to help yourself, but to help others. You will find amazing people at the International Autoimmune Encephalitis Society. You may grieve the loss of your job and for a time a sense of purpose, but they will give you purpose that your life will lack and make the most of your skills. You will end up helping people who need it more than you ever thought someone could need.

You already know this, but you have a great husband, but you will find out what some people never get to learn, that there is a love so deep that someone will take hours of their time to walk you through something that would have taken you 5 minutes in the past. You always knew Geoff was a great man, but you will learn that there is a depth to that strength that you in the past, deep down, you knew was there, but did not see on a day-to-day basis. You will see it now daily. You knew you were glad that day when you first met him, you just did not know how important it would be to you. No, you never would have asked for this disease, who in their right mind would, but you will find that as you improve ( I hate to tell you this but it will take longer than they tell you) you find a strength you did not know you had, a sense of humor that can get you through many things and an ability to learn new ways to do things to help you be more functional. Good God I hope my next letter to myself has more to tell you about how much further you have come. You will just have to wait and see won’t you.

Mari

 

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guidestar platinum logo 300x300 1 e1605914935941 - Letters to Our Before AE Selves         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.  Trivia Playing cards 3 FB 500x419 - Letters to Our Before AE Selves 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.   AE Warrior Store 300x200 - Letters to Our Before AE Selves 

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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