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A Patient’s Guide to Telemedicine

A Patient’s Guide to Telemedicine

January 8, 2021 | By Michelle Lamas, originally for Drugwatch.com

We are grateful for the permission to re-publish this article by Michelle Lamas of Drugwatch.com

A Patient’s Guide to Telemedicine

Telemedicine allows patients to have a remote, non-emergency office visit with their health care provider by using a smartphone, computer or tablet. Research shows most patients are highly satisfied with telemedicine visits, and in most instances these visits are as good as in-person visits.

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Telemedicine has been growing in popularity in recent years. As more states are implementing laws to facilitate telemedicine, more Americans are embracing remote visits with their health care providers.

From 2016 to 2017, health insurance claims for telemedicine grew by 53 percent, according to FAIR Health’s FH Healthcare Indicators and FH Medical Price Index 2019. Telemedicine claims grew more than claims for urgent care centers, retail clinics and emergency departments.

In 2017, about 76 percent of hospitals in the United States connected with patients and other practitioners virtually through video or other technology, according to the American Hospital Association.

Because of the COVID-19 pandemic, analysts for Forrester Research predicted virtual health care interactions could top one billion by the end of 2020, CNBC reported.

xTelemedicine and Telehealth Facts 640x0 c default.jpg.pagespeed.ic .wsuu4G5t94 500x316 - A Patient's Guide to TelemedicineSource: J.D. Power and American Telemedicine Association

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Telemedicine vs. Telehealth

Telemedicine is a component of a larger group of remote health care services called telehealth, though sometimes people use the terms interchangeably.

The main difference between the two is that telemedicine specifically refers to medical information exchanged remotely to improve a patient’s health. Information can be exchanged through email, two-way video, smartphones and other wireless tools.

Telehealth encompasses telemedicine and other types of remote health care information exchanges, such as health education, medical provider training, administrative meetings and more.

xHow Telemedicine is Used in Patient Care 640x0 c default.jpg.pagespeed.ic .Va7FhiUE4C 500x280 - A Patient's Guide to TelemedicineSource: New England Journal of Medicine

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Types of Telemedicine

Telemedicine is broken down into three main types of remote clinical services. These are interactive telemedicine, store-and-forward and remote patient monitoring.

Interactive Telemedicine

Interactive telemedicine is also called live telemedicine or real-time telemedicine. Consumers are most familiar with this type of telemedicine. It involves patients and providers communicating directly through video, chat or other remote methods in real time.

This type of telemedicine may take the place of an in-person office visit. It’s popular for urgent care, follow-ups, primary care, managing medications and managing chronic illness.

Store-and-Forward

Store-and-forward telemedicine, also called asynchronous telemedicine, allows patients and providers to transmit medical information for diagnosis or for later review. Examples of information that may be shared from patients to providers and from providers to other providers include lab reports, imaging studies, videos and other diagnostic results.

This type of telemedicine is popular in certain medical specialties such as radiology, ophthalmology and dermatology.

Remote Patient Monitoring

Remote patient monitoring (RPM), sometimes called telemonitoring, uses devices to remotely collect and send data to clinical providers for interpretation. Examples might include blood glucose measurements, heart electrocardiograms (ECG) or other vital sign measurements.

RPM is most often used to monitor patients with chronic illness, high-risk patients or patients recently released from the hospital.

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What Can You Use It For?

In some cases, telemedicine can replace in-office visits for regular primary care or specialist consultations or urgent care needs. Specialties that may offer telemedicine services include cardiology, neurology, oncology, gynecology, dermatology, mental health and physical therapy.

Some types of treatment may be better in person, such as biopsies or physical exams. Check with your medical provider to see if you need an in-person appointment.

It’s important to note that people with potentially life-threatening emergencies should seek in-person care.

FACT

The most common diagnosis made during a telemedicine visit is sinusitis, followed by cold, flu, pertussis and urinary tract infections. Source: Red Quill Consulting

Telemedicine uses include:

  • Chronic disease management
  • Medication management (birth control, chronic illness)
  • Non-emergency urgent care (minor injuries, respiratory illness, urinary tract infections)
  • Second opinions
  • Follow-up visits
  • Mental health and addiction counseling
  • Primary care visits
  • Medical support in assisted living facilities

Common Telemedicine Diagnoses

Mental health consultations used to be the number one diagnostic category for telemedicine, according to FAIR Health’s FH Healthcare Indicators and FH Medical Price Index 2019. But in 2017, other telemedicine diagnostic categories such as urgent care injuries surpassed mental health.

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Source: FAIR Health

COVID-19 Telemedicine Visits

Because of the COVID-19 pandemic, several telemedicine providers, insurance companies and health systems are offering free telehealth consults for anyone experiencing symptoms.

Options for virtual consults vary by state. For example, the South Carolina Department of Health and Environmental Control provides a list of participating providers and a promo code for a free telemedicine consult on its website.

To find out your options, contact your local state health department, your insurance provider or a nearby hospital system.

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Can You Get Prescriptions?

Medical providers can prescribe medications through telemedicine.

Normally, telemedicine providers must have at least one in-person visit with a patient before prescribing opioids and other controlled substances. But during the COVID-19 pandemic, the DEA has waived this requirement.

How Much Does It Cost?

The actual out-of-pocket cost of a telemedicine visit varies by insurance provider, but the average cost of a telemedicine visit is less than an in-person visit. Proponents of telemedicine say virtual visits can also save travel time and cost.

According to studies cited by the American Journal of Managed Care, the average cost of a telehealth visit is $40 to $50, while the average estimated cost of in-person care is $136 to $176.

During the coronavirus pandemic, many health insurance companies waived costs for telehealth visits related to COVID-19.

The Coronavirus Preparedness and Response Supplemental Appropriations Act, as signed into law by the president on March 6, 2020, allowed Medicare to cover telemedicine services normally only allowed for in-person visits.

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HIPAA Privacy and Security

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) protects health care information shared through telemedicine. Providers are required to use a telemedicine platform that is HIPAA compliant to communicate with patients.

During the COVID-19 pandemic, the Office for Civil Rights (OCR) at the Department of Health and Human Services (HHS) is exercising its enforcement discretion and allowing medical providers to use non-HIPAA compliant software such as Skype or Facetime.

Patients who are concerned about their privacy can ask their medical provider if they use a HIPAA-compliant telemedicine solution. If not, they may look for another provider that does.

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Is Telemedicine as Good as an In-Person Visit?

In situations where telemedicine is appropriate, telemedicine visits are typically just as good as in-person visits, according to the American Telemedicine Association (ATA). They may also be less expensive than in-person visits.

The ATA reviewed a large number of telemedicine studies for cost effectiveness and quality of care in its 2013 report, Telemedicine’s Impact on Healthcare Quality and Cost.

“For most telemedicine applications, studies have shown that there is no difference in the ability of the provider to obtain clinical information, make an accurate diagnosis, and develop a treatment plan that produces the same desired clinical outcomes as compared to in-person care when used appropriately,” the ATA said.

A more recent review of studies, performed in 2018, similarly found that in most cases, telemedicine visits were as good as in-person care.

“Being organized with anything that concerns you is even more important when the doctor doesn’t see you in person and can’t notice health issues that might be more obvious in person.”

-Diana Zuckerman, president National Center for Health Research

Eighty-three percent of the time, patients can resolve their health issues during the first telemedicine visit, according to Red Quill Consulting.

One key thing to consider is preparing ahead of time, according to Diana Zuckerman, president of the National Center for Health Research.

“It’s important to make a list in advance of every question and comment before the [telemedicine] doctor’s visit,” Zuckerman told Drugwatch. “Being organized with anything that concerns you is even more important when the doctor doesn’t see you in person and can’t notice health issues that might be more obvious in person.”

Zuckerman advises consumers to write down and keep track of their medical provider’s answers during a telemedicine visit.

Telemedicine Pros and Cons

PROSCONS
Patients may save travel and wait time compared to an in-person visit.You may still need an in-person visit after talking to a provider through telemedicine.
You can avoid exposure to germs and other infectious diseases.In some cases, you may receive better care in person.
You can access medical providers even when they aren’t near you, letting you have more choices.You may not be able to choose the medical provider depending on the telemedicine system you choose. For example, some insurance companies have their own providers that you must use.
On average, telemedicine visits cost less than in-person visits. You may also save money by not taking time off work, paying a babysitter or paying for the cost of transportation.You need a good internet connection and device to access telemedicine. Some people may not have access to internet, and technology might be difficult for older adults to use.

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Getting Started

Patients who want to conduct a telemedicine visit with a provider will first need to confirm that the provider offers this option. Second, they will need a reliable internet connection and a smartphone, computer, laptop or tablet.

If you don’t have a preferred medical provider, you can check with your insurance company for providers that participate in their telemedicine program. You’ll also want to check with your insurance company’s policies on paying for these visits.

Ask your HR department if your employer has a preferred telemedicine provider.

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Make the Most of Your Telemedicine Visit

Making the most of your telemedicine visit is a lot like making the most of your regular in-person office visits. Planning ahead and having all your information ready will ensure that your visit goes smoothly and that you and your medical provider can communicate properly.

Texas family physician Dr. Karla Dick incorporated telemedicine as a part of her practice because of COVID-19 regulations. She told Drugwatch that she has several tips for patients.

Dr. Karla Dick’s Telemedicine Recommendations

  • Have prescription bottles in front of you in case they need to be verified or discussed. Also have your pharmacy information on hand and notify your doctor of any new prescriptions.
  • Prepare and have a list of the names and locations of hospitals and specialists that have treated you since your last visit.
  • If your provider sends you a link by email or text with a telemedicine how-to video, watch it before your visit. Some providers also have videos and information on their website.
  • Make sure you download any apps or create an account on a telemedicine website your provider instructs you to use. Familiarize yourself with the app or website and call your provider with questions before your visit.
  • Make sure your device (phone, tablet or laptop) is charged or plugged in.
  • Check in to your visit at least ten minutes prior to your appointment time.
  • Be patient. The provider is most likely seeing another patient.
  • Call your medical provider after your telemedicine visit by phone if you didn’t understand what was discussed or you need to clarify any information.

——-

xmichelle llamas 80x80 c default.jpg.pagespeed.ic .b2UTPZyA L - A Patient's Guide to TelemedicineWRITTEN BY:
Michelle Llamas, Senior Writer for Drugwatch.com

Michelle Llamas has been writing articles and producing podcasts about drugs, medical devices and the FDA for nearly a decade. She focuses on various medical conditions, health policy, COVID-19, LGBTQ health, mental health and women’s health issues. Michelle collaborates with experts, including board-certified doctors, patients and advocates, to provide trusted health information to the public. Some of her qualifications include:

  • Member of American Medical Writers Association (AMWA) and former Engage Committee and Membership Committee member
  • Centers for Disease Control and Prevention (CDC) Health Literacy certificates
  • Original works published or cited in The Lancet, British Journal of Clinical Pharmacology and the Journal for Palliative Medicine

 Original article published at Drugwatch.com.

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. 

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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.  

AE Warrior Store 300x200 - A Patient's Guide to Telemedicine 

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

 

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Caregiver Tribute

Caregiver Tribute

November 25, 2020 | From the IAES Community

IAES wishes to honor all those caregivers that have not only loved, helped and never given up on all those with any form of AE but who have also helped all those suffering or have suffered from all forms of illness! Below are some thoughts and writings from both caregivers and those who wish to thank the many caregivers who have helped them.

We honor all of you….

——–

This is from my experience as a person with AE receiving care | By Mari Wagner Davis

As a person with autoimmune encephalitis, I woke up not knowing what had happened to me. I had to ask my husband, Geoff, what had happened. 

Despite my having a brain injury and forgetting so much of the last six years, his answer to me when I say, “I got so stupid,” is “You’re not stupid, you just forgot some things.” He’s had to figure out bank accounts, paying bills, our children’s college loans – well, you name it. Never during this time has he complained; instead, he has done his most to make me feel as capable as possible. Sometimes, it wasn’t much; other times we had a lot to celebrate, such as when I passed a special driver’s test, and most recently when I finished reading my first book in four years. He has been thoughtful and the best caregiver while still trying to allow me to do as much as I possibly can.

The life of a caregiver is not easy. They balance their own schedules with our needs. They balance concern with encouragement. They balance their own time with time for the things we need. They squeeze in time for our appointments, meds, questions, all without ever letting us know that their time is squeezed.

One thing I know is that the life of caregiver is one born out of love; no one would ever do all that they do except for love.

~Mari Wagner

My Life as a Caretaker | By Timothy Crossley

Being a teenager while juggling school and caring for my mother has its stresses. It’s hard for me to find her lying on the floor, seizing. I keep my schoolwork done at school so that when I’m at home I can keep an eye on my mother. I’m always asking how she’s feeling.

That’s my life as a caregiver.

~Timothy Crossley

Caregiver Tribute| By Linda Lowther and Amy Crane

I was having tremors and a very unsteady gait for about five months. I had been misdiagnosed by a neurologist with early-onset Parkinson’s disease. But as a nurse for 20 years, I knew something more was going on. One day in March 2015, I woke up and told my husband that I thought I was getting the flu and felt ill, so I called my manager to say I wouldn’t be in for work. That night when my husband returned home, I was unconscious and couldn’t be woken up. He called an ambulance and then called my sister. She then called my parents and brother, and all came to see me at the hospital. I was on a ventilator – I was unable to breathe on my own and was in a coma for two weeks.

I was then sent to a rehab hospital for over a month. I had to learn how to walk, talk, eat, write and spell all over again. My husband had told the MDs at the rehab facility that my parents had to take care of me. So, my parents had me move in with them to my childhood home. They took care of me because mentally I wasn’t able to do much for myself. They worked with me on word searches to help me improve my memory and so on.  My sister came to see me almost every night and would help to give me baths when I couldn’t do much for myself. This went on for over four years until I was well enough to drive and live on my own again.

If it wasn’t for what my parents did, such as my mom talking with me, singing with me and helping me, I truly would not be where I am today.  And my sister with her many sleepovers and sisterly talks helped me so much.  My mom and sister also helped me deal with my divorce when my husband filed for divorce after I was well enough to understand, something that was really hard on me mentally and physically.

I’m so grateful for my mom and sister for being the best caregivers ever. I love you with all my heart and I thank you for all you’ve done for me every single day, even up until today. I would not be where I’m at if it wasn’t for you, your love and support. Your caring hands enabled me to get well enough so that I am buying a newer, smaller home which I am very excited about! I truly cannot thank you two enough for all you have done for me and that you continue to do on a daily basis. I truly would not be where I’m at today without you. Love you mom.

~Linda Lowther and Amy Crane

Strength in the Storm and Beyond | By Tabitha Orth

Each case of autoimmune encephalitis claims many victims. While the focus is centered on the AE patient, it is the family caregivers who are the unsung heroes in every case.  Like a level 5 tornado, AE descends.  The routine calm of our daily lives is left in tatters from the torrent of destruction that struck out of nowhere.  What is left is not recognizable to what was just a short time before. 

It is the family caregiver – our spouse, parents, family members and partners – who are thrown into this traumatic, life-threatening upheaval and left to navigate the course of our care. While in shock, they must learn to navigate the medical complex, find an expert in the field of autoimmune neurology, understand the disease and its treatments, advocate for our best interests and keep a sense of normalcy going at home. Often, the patient is their confidant, so they are alone in making decisions and put their own losses, pain and suffering aside to care for us. They don’t voice their fears to us because we are not capable of answering their concerns. Their bravery, sacrifice and determination, all fueled by their unwavering love and devotion, propel them forward through the eye of the storm.

How do we say, “Thank you?” What do you say to the person who saved your life, shouldered the pain, worries and responsibilities all on their own with no concern for their own wellbeing?  They nurture us. They encourage us. They keep us safe through the process of our battle with AE.  Our caregiver has always been center stage in helping us reach recovery through our rehabilitation efforts, while shouldering that immense burden in silence.

I am here because my husband made sure I would survive and thrive. I am here because my son has always shown me patience, love and guidance.  The sacrifices they have made in order to do all the heavy lifting, pouring all their energy into my health and wellbeing, is why I am here today. 

November is National Family Caregiver Month. Please join me in shining a light on the unsung heroes of our AE journeys.  Without them we would not be where we are today.  With all that I am and all that I have, I thank each one of you. Thank you.

~Tabitha Orth,

President and Co-founder,

International Autoimmune Encephalitis Society

——–

We hope you find the following articles for caregivers helpful!

Disability & Health Information for Family Caregivers | Article from the Centers for Disease Control and Prevention

Caregiving can be stressful no matter how much you love your family member. Autoimmune Encephalitis is often a disease that takes time to recover from and some individuals will continue to have ongoing disabilities that does not mean that they cannot have a fulfilling life. Adjusting to what life used to be or look like requires time for both the person with AE and their family members. This article talks about how caregivers can care for themselves.

Neuropsychiatric symptoms and caregivers’ distress in anti-N-methyl-D-aspartate receptor encephalitis | Research published from the Chinese Academy of Medical Sciences and Peking Union Medical College

This journal article, published in September 2020, found that patients with anti NMDAR encephalitis often present severe neuropsychiatric symptoms, which aggravate the burden on caregivers. Immunotherapy significantly improves neuropsychiatric symptoms, and thus reduces the distress of caregivers.

FDA Listening Session: Discussion on living with a rare disease during the pandemic | Video from the National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD) and FDA co-hosted a virtual “listening session,” during which the rare disease community had the opportunity to share their experience living with a rare disease in the pandemic and submit questions in advance directly to FDA staff. Listening sessions are meant to facilitate expeditious sharing of patient and advocate perspectives on how their disease and treatments affect their lives.

ABLE Accounts | Financial resource 

For disabled individuals or families caring for a person with a disability, an Able account allows you to save money to provide care without being taxed on it. This can include medications, therapy, food, housing and other disability needs. The Able Act currently only applies to those who become disabled before the age of 26. This article explains much more about Able accounts. Able accounts are provided by more than one provider, so one should look at the rules and how each works to find the best for you.

——-

Looking for a gift for your caregiver? Show your appreciation with an gift from the AE Warrior Store:

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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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

IAES Celebrates Its 4th Anniversary!

IAES Celebrates Its 4th Anniversary!

September 4, 2020 | Tabitha Andrews Orth, IAES President

Dear AE Family,

Four years ago this month, IAES was born. Prior to that, the co-founders had been working together as administrators of a support group at this very address. Four years ago, experts in the field were few and far between. In the USA you had to travel to John Hopkins, Mayo, Upenn or CHOP for children. It was common to be misdiagnosed, undiagnosed, undertreated, and have a neurologist who was willing to have you be their first case of AE. 

In 2014 support groups were full of people looking to understand AE and what to expect. Misinformation, alternative medicine, holistic remedies, and desperation was the mood of the day. We saw how people were getting sicker following misinformation and not getting proper treatment. Many would-be placed on psych holds or legally committed and turned away at ERs as psych cases. There was no place to turn if your treatment was denied, wanted to understand the disease or treatment, panicked that you could be relapsing, and it was rare to have a parent ask to join because their child was diagnosed. 

We began by breaking away from the norm and created a new path forward. We became a science-based support group believing the ‘education was power’ and would lead to strong advocacy skills that would lead to better outcomes for the patient. We started to locate experts in the field and developed a global Doctor’s list. We located free and discounted flights and accommodations near AE centers, so people could get to an expert, taught people how to overturn treatment denials, created visuals to explain AE easily, prevented suicide due to psychiatric symptoms in AE, and spread awareness. 

“If you build it, they will come.” 

In 2014 we coined the phrase ‘AE Warrior’ to educate the public on the difference between encephalitis (who called themselves ‘encephalitis survivors) from AE as it was an on-going battle longer than a few weeks as seen in non-autoimmune types of encephalitis. In 2015 we designed the AE awareness ribbon and registered it on the International registry. 

Today, it is common to see children diagnosed very early. Knowledgeable experts are peppered across the globe and a new area on neurology, autoimmune neurology, is taught as a specialty. Every aspect of your AE journey is supported via IAES. You can find resources for any aspect of that struggle, up to date research, videos, podcasts, slide shows, caregiver and patient support, rehabilitation exercises, resources that touch all areas of your daily life, overturn treatment denials, find help for discounted medical coverage and overbilling of hospital bills in the USA, personal stories and understand this group of diseases more readily because of IAES. 

Last February IAES celebrated our inaugural AE Awareness month and rolled out our gift of love and help for AE families, AE trivia playing cards. In collaboration with Dr. Josep Dalmau, we developed the first educational and rehabilitation product in the world for AE. Our AE trivia cards are a ‘must-have’ for any patient or family touched by this disease. I wish something like that was available when I got sick in 2013! (See/order a deck here: https://shuffled-ink.myshopify.com/products/autoimmune-encephalitis-trivia-playing-cards?fbclid=IwAR0H_kiQ2fylP69P_7ByGpeGy31QVHqYQbdgyrRL4mX0sltMRulGzefUwfs). 

Although we remain a small community, other organizations and groups have sprung up or expanded their services by following our example. 

The world is a better place because of IAES. We truly have changed the entire landscape of the experience a patient and family experiences. It was a road untraveled. 

This week we were informed that IAES has been nominated for The George H.W. Bush Points of Light Awards Celebration Inspiration Honor Roll for our work creating AE Trivia cards and educating the public on COVID-19 which began early on when we rolled out our website section March 3rd.

It is our honor and privilege to serve this community and we look forward to the years to come. One day there will be a cure for AE. Today we can say that some cases have been cured as Dr. Dalmau confirms with us, just like some cases of cancer are cured there is no cure for cancer. Just as some cases of AE can be cured yet there is no cure for this group of diseases either. 

We have a great deal more work to do. IAES remains the only patient/family-centered AE organization in the world. If you can support IAES, a $5 -$10 donation does add up and make a difference. 

Make a donation: https://autoimmune-encephalitis.org/donate/ 

Support us by becoming an IAES angel: https://autoimmune-encephalitis.org/iaes-angel/ 

Create a Facebook fundraiser: https://www.facebook.com/fund/IAESociety/

Other ways to support IAES: https://autoimmune-encephalitis.org/ae-awareness-month-2020/ 

On behalf of all the volunteers who dedicate their time and talents to IAES to ensure your journey is made easier, we thank you for the trust and support you have placed in us. It is our privilege to walk with you and serve this community.

Devotedly Yours,

Tabitha Andrews Orth, 

International Autoimmune Encephalitis Society President

 

IAES-fourth-birthday 

 

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

seal - IAES Celebrates Its 4th Anniversary!

 

 

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 - IAES Celebrates Its 4th Anniversary!

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 - IAES Celebrates Its 4th Anniversary!

 

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

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

Aphasia as a Symptom of Autoimmune Encephalitis

Aphasia as a Symptom of Autoimmune Encephalitis

May-26-2020 | Sarah Reitz, PennNeuroKnow.com

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 Aphasia is a language disorder affecting at least 2 million Americans that impairs the ability to produce or comprehend speech, along with the ability to read or write1. It can result from any injury or disease that damages the language centers of the brain2, including autoimmune encephalitis (AE). To better understand aphasia in the context of AE, it is important to first know how the brain processes language as well as the different types of aphasia that can occur as a result of damage to any of these language centers.

How is language processed in the brain?

The ability to comprehend and use language is a complicated process that involves many regions of the brain. A few of the areas typically associated with language include Broca’s area, Wernicke’s area, the insular cortex, and the angular gyrus (Figure 1). Broca’s area, found in the left frontal cortex, together with the insular cortex, are important for producing language (called expressive language). Wernicke’s area and the angular gyrus, both located in the temporal lobe, play a major role in understanding the context and meaning of language (called receptive language)3-5.

PNK IAES Aphasia Handout 300x168 - Aphasia as a Symptom of Autoimmune Encephalitis

What is aphasia?

There are many different types of aphasia, ranging from mild forms that involve occasionally struggling to find the right words, to much more severe forms that limit nearly all forms of communication. The level of aphasia varies dramatically from patient to patient, with each person having his or her own unique language difficulties. Still, aphasia has been classified into a few main subtypes based on the main language deficits experienced by the patient (Figure 2).

 

One of the more mild forms of aphasia is anomic aphasia. People with anomic aphasia have difficulty finding the right words or naming things, sometimes describing the phenomenon as having the word on the tip of their tongue. However, they can often describe the word in detail, such as “the blue pants made of denim” when they are looking for the word “jeans”. Sometimes, patients will only have difficulty naming specific categories of words (such as nouns, or only words related to a specific activity), though the reasons for this are unknown. They are able to speak and write fluently, though they will often use vague terms to describe the word they are having difficulty with. Additionally, the ability to read remains intact6.

 

Intermediate forms of aphasia include Broca’s aphasia and Wernicke’s aphasia2,6. Like their names suggest, these types of aphasia result mainly from damage to either Broca’s or Wernicke’s areas. Broca’s aphasia is sometimes known as “non-fluent aphasia” due to the extreme difficulties in speech production experienced by the patient. Expressive language is severely limited, with speech oftentimes consisting of fewer than 4 words at a time. In contrast, patients with Wernicke’s aphasia can still produce fluent speech without much effort, but their ability to understand the meaning of words is impaired. So, while they can connect words into sentences and speak easily, the sentences themselves will usually not make sense and often consist of jumbled, disjointed words. Because comprehending the meaning of words is damaged, patients with Wernicke’s aphasia also have a very difficult time with reading and writing. Other people experience various combinations of these two types of aphasia, which are classified in Figure 2 based on the symptoms exhibited6.

The most severe form of aphasia is global aphasia. This disorder severely limits both receptive and expressive language. The ability to read and write is nearly nonexistent, as patients can neither comprehend nor produce language. While their language abilities are almost absent, patients with global aphasia can have normal non-language related intellectual and cognitive capabilities2,6.

Interestingly, aphasia is not limited to written and spoken languages. Because visual languages like sign language are also processed and produced by the language centers of the brain7, they can also be impaired, causing sign language speakers to lose the ability to use or understand sign language2,8.

Aphasia in autoimmune encephalitis

Aphasia is caused by damage to the language centers of the brain. While strokes are the most common cause9, any disease or injury that damages the regions of the brain involved in language can cause aphasia. These include things like brain tumors, traumatic brain injuries, progressive neurodegenerative disorders, and autoimmune encephalitis. The specific regions damaged by the injury or disease will determine which type of aphasia results2.

 

There are multiple case reports that document instances of aphasia in patients with autoimmune encephalitis. Many of these patients suffer specifically from anti-NMDAR encephalitis10-13, although aphasia has also been recorded in other types of AE14. A 5-year study of 501 patients diagnosed with anti-NMDAR encephalitis tracked symptom development and found that speech problems are common early symptoms. Around 70% of patients over the age of 12 showed some form of a speech disorder, while nearly 85% of those younger than 12 exhibited symptoms of a speech disorder10! In at least one case, however, aphasia developed 19 months after the first AE symptoms, suggesting that there is no definitive timeframe for development of this disorder12.

 

Various types of aphasia have been reported with AE. Some patients show symptoms similar to Broca’s aphasia, with effortful speech and trouble producing language11. Others have reported more severe, global aphasia consisting of trouble both comprehending and expressing language12. In one case, a woman with anti-NMDAR encephalitis had persistent aphasia for 6 months with no other symptoms typically experienced in AE13. What is clear is that aphasia in AE, just like aphasia caused by other injuries or disease, exists on a spectrum and can include any number of language impairments.

 

 

Recovery from aphasia

Because so many injuries and diseases can cause aphasia, there is no standard treatment for the disorder. Each patient must be treated individually, taking many factors into consideration. However, speech-language therapy is critical for all types of aphasia2.

 

One major factor considered in treatment plans is the cause of the aphasia. Aphasias resulting from neurodegenerative disorders show much lower rates of recovery due to the progressive nature of the neurodegeneration15. However, aphasia resulting from other causes will usually show at least some degree of improvement with proper treatment2. In the case of autoimmune encephalitis, aphasia symptoms tend to disappear once appropriate treatment for the underlying encephalitis is administered11-14.

 

Other factors that may determine a patient’s outcome are the type of aphasia the patient is experiencing as well as the level of communication skills prior to aphasia onset. A rich vocabulary before the onset of aphasia tends to predict a better recovery2.

 

Advancements in aphasia research, and the underlying diseases that cause it will continue to inform better treatments, improving outcomes for millions of people across the world and helping them regain their communication abilities.

Download Aphasia .pdf

Image References:

Figure 1 image via The Conversation, CC BY-ND. https://theconversation.com/what-brain-regions-control-our-language-and-how-do-we-know-this-63318

Figure 2 image via the National Aphasia Association, https://www.aphasia.org/graphic-assets/

References:

  1. Aphasia Statistics. National Aphasia Association Available at: https://www.aphasia.org/aphasia-resources/aphasia-statistics/. (Accessed: 2nd May 2020)
  2. Damasio AR (1992) Aphasia. NEJM 326(8):531-539
  3. Friederici AD (2011) The brain basis of language processing: from structure to function. Physio Review. 91(4)1357-1392
  4. Van Ettinger-Veenstra H, McAllister A, Lundberg P, Karlsson T, Engstrom M (2016) Higher language ability is related to angular gyrus activation increase during semantic processing, independent of sentence incongruency. Hum. Neurosci. 10:110
  5. Oh A, Duerden EG, Pang EW (2014) The role of the insula in speech and language processing. Brain Lang. 135:96-103
  6. Aphasia Definitions. National Aphasia Association Available at: https://www.aphasia.org/aphasia-definitions/. (Accessed: 2nd May 2020)
  7. Hickok G, Love-Geffen T, Klima ES (2002) Role of the left hemisphere in sign language comprehension. Brain and Lang 82:167-178
  8. Damasio A, Bellugi U, Damasio H, Poizner H, Van Gilder J (1986) Sign language aphasia during left-hemisphere amytal injection. Nature 322:363-365
  9. Aphasia FAQs. National Aphasia Association. Available at: hyyps://www.aphasia.org/aphasia-faqs/. (Accessed: 2nd May 2020)
  10. Titulaer M et al. (2013) Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study. Lancet Neurol 12:157-165
  11. Bhat P, Ahmed A, Jolepalem P, Sittambalam C (2018) A case report: anti-NMDA receptor encephalitis. Journal of Comm Hospital Internal Med Perspect 8(3):158-160
  12. Mario LSJ, Ramiro R, Ruth DVA, Jose F, Carmen OL, Mariana EN (2017) Cortical aphasia and apraxia as main clinical presentation of anti-NMDAR encephalitis relapse with a positive CSF PCR for cytomegalovirus. Neuropsych 7(5):620-628
  13. Constantinides VC et al (2018) Anti-NMDA receptor encephalitis presenting as isolated aphasia in an adult. Neurocase 24(4)188-194
  14. Hayata Y, Hamada K, Sakurai Y, Sugimoto I, Mannen T, Takahashi Y (2014) Anti-glutamate ε2 receptor antibody-positive and anti-N-methyl-D-aspartate receptor antibody-negative lobar encephalitis presenting as global aphasia and swallowing apraxia. Case Rep Neurol 6:291-296
  15. Primary Progressive Aphasia. National Aphasia Association Available at: https://www.aphasia.org/aphasia-resources/primary-progressive-aphasia/. (Accessed 12th May 2020)

 

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Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and 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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It is the Season When We Give Thanks

It is the Season When We Give Thanks

Barbara Layt Vujaklija | November 28-2019

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

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

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

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

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

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

Thanks for understanding

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

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

 Thanks for loving and listening

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

Thanks for life and a new me

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

Thanks to the Lord

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

Thanks for hope, life, love

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

Life and smiles

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

This group

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

Caregivers

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

 

Make a Comment below to share what you are Thankful for

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

seal - It is the Season When We Give ThanksBecome 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

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Meet the IAES Admins ~ Series Introducing Jo-Anne Villar

Meet the IAES Admins ~ Series Introducing Jo-Anne Villar

November 6, 2018 | Jo-Anne Villar

 

Jo-Anne Villar with her daughter Jordan

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

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

This month we are spotlighting Jo-Anne Villar


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

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

 

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

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

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


Donate to Support IAES and our Life Saving Mission


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

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

Meet the IAES Admins ~ Series

Meet the IAES Admins ~ Series

 

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

Co-founders Gene Desotell and Tabitha Andrews Orth

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

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

This month we are spotlighting Gene Desotell Co-founder and Treasurer.


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

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

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

 

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

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

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

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


Donate to Support IAES and our Life Saving Mission


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

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

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


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization 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.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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