Select Page
theherd - THE HERD July 1st edition

Don’t Be Left Behind. Keep Up With THE HERD!

Selected Highlighted News in the field of Autoimmune Encephalitis~ July 2021 1st Edition

In this Issue~

 

  • *Announcements: #AETuesdayTries, Two AE Warriors Out for Blood (plasma), Mayo Clinic Labs’ new Kelch-11 antibody test, PBS Series, MYSTERIES OF MENTAL ILLNESS, Features IAES member, New AE Wingman Collection 
  • *Children’s Corner (for all ages): Psychiatric Phenotypes of Pediatric Patients With Seropositive Autoimmune Encephalitis
  • *ABI Rehabilitation: Brain Teaser: Can you count the F’s in this sentence?, Free ‘Hope’ coloring page
  • Useful Tips for the AE Warrior:  The Web’s most current and comprehensive directory of Patient Assistance Programs 
  • Most Popular Visual Downloads: Teratoma, Things I am no Longer Apologizing For
  • *COVID-19’s Impact on the AE Community:  She Had COVID-19 and Never Knew. Then Encephalitis Set In, It isn’t over for us’: For those with weakened immune systems, COVID-19 vaccines don’t mean the end of the pandemic
  • *Featured AE Article: Brain dysfunction and thyroid antibodies: autoimmune diagnosis and misdiagnosis
  • *Clinician’s Corner: Anti-NMDAR encephalitis for psychiatrists: the essentials
  • *COVID-19 Clinician’s Corner: MOG-associated encephalitis following SARS-COV-2 infection
  • *Open Access: Relevance of Brain 18F-FDG PET Imaging in Probable Seronegative Encephalitis With Catatonia: A Case Report
  • *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
  • *AE Warrior Store: See our new AE mug and hat collections
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

Announcements

Our new program “Tuesday Tries” has received such praise and enthusiastic reviews from the AE community. It addresses a missing piece of the puzzle in support and rehabilitation that our members were lacking. 

The next monthly #AETuesdayTries zoom meet-up will take place July 27th and will always be the last Tuesday of each month.  Join AE patients and caregivers of all ages and stages in their AE journey.  Receive insights and encouragement from others and celebrate your critical milestones in recovery and care while  building a more resilient personal AE network!

Your facilitator, Tessa McKenzie, IAES’ Chief Resilience Officer, is a life coach and studies “resilience” through her private practice, Envisage Vocation Creation and work with Johns Hopkins University’s Life Design Lab. Join Tessa and other AE patients and caregivers who are ready to “Share Your Try Tuesdays”. Tessa will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins” and opportunities for relationship building.

Two AE Warriors Out for Blood (plasma)

 

Kate and Marleigh Fisher-plasma-blood drive

Kate and Marleigh Fisher ~

A Duo You Can’t Say ‘No’ To

 

Last month IAES member Kate Fisher and her daughter, Marleigh participated in Australian National Blood Donor Week at the Sunshine Coast University Hospital.

“We do as much media as we can”, states Kate, “To raise awareness about Autoimmune Encephalitis, particularly what a pediatric presentation may look like as that is different than adult cases. Additionally, we do our best to recruit new plasma donors to make IVIG.”

Last year Kate and Marleigh Fisher created a great campaign toward this effort beginning with a 100 day lead up to the anniversary of Marleigh’s initial diagnosis. Marleigh has her own Lifeblood team called #milkshakesformarleigh and we aimed to recruit 100 new plasma donors in 100 days. It’s now taken on a life of its own and we have donors from every state and territory in Australia with over 300 donations last year!

During National Blood Donor Week, and Australian Red Cross Lifeblood urges Queenslanders to roll up their sleeves to make a life-saving blood or plasma donation. On the Sunshine Coast alone, 400 blood donations are desperately needed in the next few weeks.

IAES urges all members to encourage friends and family to donate plasma. Donors in the USA are often provided a financial compensation. Compensation varies by Location.

Mayo Clinic Labs’

new Kelch-11 antibody Test

 

Mayo Clinic Laboratories offers first test to detect recently discovered autoimmune disease associated with testicular cancer

 

ROCHESTER, Minn. — Mayo Clinic Laboratories has launched a first-of-its-kind autoimmune test for the Kelch-like protein 11 antibody, or KLHL11, which is used to detect autoimmune disease associated with testicular cancer. The test is available nationally and internationally.

2019 study made the breakthrough discovery of a disease called “testicular cancer-associated paraneoplastic encephalitis.” This disease causes severe neurological symptoms in men, where they progressively lose control of their limbs, eye movements and, in some cases, speech. While the disease begins with a testicular tumor, it appears to cause the immune system to attack the brain, leading to numerous misdiagnosed or undiagnosed patients.

Dr. Divyanshu (Div) Dubey, (On the IAES Doctor’s List), explains how Mayo Clinic Labs’ new Kelch-11 antibody test — the first in the world — can confirm diagnosis, guide treatment, and improve outcomes in patients affected by testicular cancer-associated paraneoplastic encephalitis.

“We want providers to know this autoimmune disease is out there, and we have a tool to diagnose it,” says Dr. Dubey.

PBS Series MYSTERIES OF MENTAL ILLNESS

Features IAES AE Warrior Couple Who Battled anti-NMDAr Encephalitis

IAES was asked to consult with PBS on their special just released series MYSTERIES OF MENTAL ILLNESS. In episode 1 of a 4-part series, IAES member Lorina Gutierrez is featured with her husband Stephen. Lorina’s story of being misdiagnosed as a psychiatric patient only to later learn she had anti-NMDAr has brought national attention to Autoimmune Encephalitis. The AE community is grateful for the courage the Gutierrez’s showed by willing to share their personal and difficult story on a national stage.

The Chicago Tribune says: “It will break your heart while it enlightens.”

Mysteries of Mental Illness explores the story of mental illness in science and society. The films follow the contemporary experiences of individuals and trace the historical evolution of this complex topic from its earliest days to the present.

We are honored to include the stories of brave individuals pushing back against stigma. IAES extends our thanks to Lorina Gutierrez and Stephen Gutierrez.

We hope you’ll watch!

Tuesday June 22:

Episode 1: Evil or Illness?

Episode 2: Who’s Normal?

Episode 3: Rise and Fall of the Asylum

Episode 4: New Frontiers

AE Warrior Store

New Arrivals ~ The AE Wingman Collection

New arrivals at The AE Warrior Store. We are pleased to present ~The AE Wingman Collection.  Get some  swag for your spouse, partner, BFF, caregiver, or advocate that is sure to bring a smile and remind them of how proud you are of their fighting spirit and dedication to helping you on your AE journey.

Any AE Warrior knows that we are NOTHING without our #AEWingman’s support and guidance. Our Wingman is the person who has been right by our side encouraging us every inch of our AE journey.

The moniker “AE Wingman” should invoke a sense of pride and reaffirmation of the courage and determination it has taken to advocate so long and hard to help us regain health.

Don’t forget to #GiveAtCheckOut if you purchase your gift through PayPal! (See: Shop and Support IAES Through PayPal’s #GiveAtCheckOut program below).

The proceeds of your purchase will immediately support Autoimmune Encephalitis patients, caregivers, and families who are walking this difficult journey. Proceeds also go to support research that may one day lead to a cure.

Children’s Corner

Pediatric AE_FB

Psychiatric Phenotypes of Pediatric Patients With Seropositive

Autoimmune Encephalitis

Objectives: Patients with Autoimmune Encephalitis (AE) often present with symptoms that are broadly characterized as psychiatric or behavioral, yet little attention is given to the precise symptomatology observed.

Psychiatric symptoms were seen in 92% of patients in our 225 patient cohort. Depressive features (72%), personality change (64%), psychosis (48%), and catatonia (32%) were the most common psychiatric symptoms exhibited. On average, patients experienced impairment in ≥4 of 7 symptom domains. No patients had isolated psychiatric symptoms. 

Conclusions: The psychiatric phenotype of AE in children is highly heterogenous. Involving psychiatry consultation services can be helpful in differentiating features of psychosis and catatonia, which may otherwise be misidentified. Patients presenting with psychiatric symptoms along with impairments in other domains should prompt a workup for AE, including testing for all known antineuronal antibodies.

ABI Rehabilitation From AE

shutterstock_407634274_train your brain

Are You Working on your Cognitive Rehabilitation from AE?

 

Brain Teaser: Can you count the F’s

in this sentence?

 

 

Quick! Count the number of times that the letter F appears in the following sentence:

 Finished files are the result of years of scientific study combined with the experience of years.”

How many did you find?

SolutionMost people say three. Why? We often don’t correctly process the word “OF” for two reasons. First, the letter F usually makes the “f” sound, like in “fox”. However, in the word “of”, it makes a “v” sound. Second, you have probably read the word “of” so many times in your life that you process it as one unit, overlooking the second letter/ sound.

Hope ~ Coloring Page

hope

According to experts, coloring reduces stress by activating the brain’s right hemisphere. When we are stressed or worried, we activate the left side of our brain, which is responsible for analytical and cognitive processes. But when we color, we switch gears and access the right side of the brain, the creative, artistic region, which quiets the left part, allows creativity to take over and blocks out worries.

Like meditation, coloring promotes relaxation by focusing the brain on the present moment. When patients color, they engage in the ‘here and now’ and practice mindfulness, which can be a very meditative and relaxing process. Because you’re occupied with thoughts such as ‘what color do I use?’ and ‘how should I color this part?,’ your right brain can relax and give you a break from difficult thoughts about procedures, their diagnosis, pain and the like. Art is a nonverbal way of processing all of these difficult feelings.

And like many activities that require creativity, coloring can boost self-esteem and generate positive feelings.

IAES has several free coloring pages you can choose from. We HOPE you give coloring a try.

Useful Tips for Patients & Families

Who’s Who On Your Medical Team? 

Who's Who on Your Medical Team-By Mari Wagner Davis-FB post

If you have been hospitalized for Autoimmune Encephalitis, chances are you were seen by many different doctors.  Keeping them straight can be difficult if you are not sick, let alone if you have Autoimmune Encephalitis and memory issues. This can be particularly challenging if you are a patient in a teaching hospital and may be seen by different levels of doctors. Teaching hospitals often have doctors who are participating in research and are often at the cutting edge of diagnosis and treatment. 

This informative and helpful guide will navigate you through the many types of medical professionals you will come in contact with; their roles and how they work together.  The more you understand about the medical system, staff and their roles, the easier it is to direct questions and concerns to the proper person and ensure that what is needed for discharge is put in place.

Most Popular Download

Teratoma

ENCEFALITIS AUTOINMUNE infographic
ENCEFALITIS AUTOINMUNE infographic
Covid-19

COVID-19’s Impact on the AE Community

She Had COVID-19 and Never Knew. Then Encephalitis Set In.

 

 

As a first-year law student, Kentucky resident Shelby Ponder, 23, started her dream internship with the U.S. attorney’s office on July 6, 2020.

Three days later her life changed drastically.

“Everything was perfectly normal until July 9,” Ponder told Healthline.

She started feeling sick with strep-like symptoms and immediately got tested for COVID-19. The test came back negative, and so Ponder continued on with life as usual.

“My strep-like symptoms only got worse. I was prescribed an antibiotic over telehealth, which obviously didn’t work. I continued going to work until the 13th, at which point my brain and body just snapped,” she said.

Her fever stayed between 101 and 103.9°F for 2 solid weeks despite taking ibuprofen and acetaminophen every 2 hours. She began having hallucinations.

“I don’t really remember this time very much except for the horrible fear, which I couldn’t really acknowledge in that state of mind. I had lost all motor skills. Brushing my teeth was so frustrating, and I eventually had to have my sisters bathe me and brush my hair,” she said.

After about 2 weeks, Ponder developed insomnia. Because she was drained physically and mentally, she laid in bed exhausted yet unable to sleep.

‘It isn’t over for us’: For those with weakened immune systems, COVID-19 vaccines don’t mean the end of the pandemic

 

 

Get vaccinated act unvaccinated-FB post

The medications that prevent rejection of a transplanted organ also block many transplant patients from making protective antibodies. A recent study from Johns Hopkins University School of Medicine found that only 17% of transplant recipients had antibodies after their first dose of a COVID-19 vaccine, with an additional 35% responding after two shots.

Take precautions 

Until results from clinical trials are in, Dr. Dorry Segev at Johns Hopkins Medical Center tells his transplant patients to “get vaccinated, act unvaccinated.” 

They should take all the precautions the Centers for Disease Control and Prevention recommends for people with no protection, such as continuing to wear masks and socially distance, he said. 

When the CDC last month abruptly lifted its mask recommendations for vaccinated people, Segev said, “the world quickly got less safe for immunosuppressed people.” It’s now far more frightening for transplant recipients to do something as simple as grocery shopping, because they don’t know which unmasked person near them is actually safe.

Segev is studying the effectiveness of a third dose, hoping “There’s something we will ultimately be able to do for transplant patients.” 

He hopes to soon launch a formal interventional trial, providing a third shot in a clinical setting, where he can ensure safety and track participants’ response.

Featured AE Article~

TPO Marker

Brain Dysfunction and Thyroid Antibodies: Autoimmune Diagnosis and Misdiagnosis

 

We aimed to retrospectively review 144 cases referred with suspected Hashimoto Encephalopathy over a 13-year period, and to determine the clinical utility of thyroid antibodies in the course of evaluation of those patients.

In total, 73% of the patients referred with suspected Hashimoto Encephalopathy had an alternative non-immune-mediated diagnosis, and more than half had no evidence of a primary neurological disorder. Thyroid antibody prevalence is high in the general population, and does not support a diagnosis of Autoimmune Encephalopathy in the absence of objective neurological and CNS-specific immunological abnormalities. Thyroid antibody testing is of little value in the contemporary evaluation and diagnosis of Autoimmune Encephalopathies.

In our experience within our specialty referral practice, the diagnosis of HE/SREAT is assigned to a variety of patients with elevated thyroid antibody values and diverse neuropsychiatric symptomatic presentations, generally without objective demonstration of encephalopathy, CNS inflammation or objective steroid response.

Conclusion:

We conclude that thyroid antibodies have served their time as diagnostic biomarkers in Autoimmune Encephalopathy well, but their role in the evaluation of Autoimmune Encephalopathy is likely redundant at this point, and certainly less specific than a clinical history of autoimmune disease and neural-specific antibodies. Our experience indicates that a diagnosis of HE/SREAT is often given to patients presenting with cognitive symptoms and a variety of neurological and non-neurological complaints, in the setting of elevated thyroid antibodies in serum without objective cognitive abnormalities. The utility of testing for thyroid antibodies seems questionable in the modern era which has brought availability of validated clinical criteria and advanced neuroimmunologic diagnostics. Over diagnosis of Autoimmune Encephalopathy brings undesired consequences such as iatrogenic harm, cost of unnecessary immunosuppressive therapies and delayed diagnosis of the correct neurological disorder. As always, test results need to be interpreted in the context of detailed clinical history and examination.

Clinician’s Corner

image 20 - THE HERD July 1st edition

Anti-NMDAR encephalitis for psychiatrists:

The essentials

 

Learning objectives:

  1. (a) What is Autoimmune Encephalitis?
  2. (b) What is anti-NMDAR encephalitis?
  3. (c) When should anti-NMDAR encephalitis be suspected?
  4. (d) How should suspected anti-NMDAR encephalitis be investigated?
  5. (e) How should the practical management and treatment of anti-NMDAR encephalitis be approached?
  6. (f) What is the prognosis for anti-NMDAR encephalitis?

Anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis predominantly presents with psychiatric symptoms. Psychiatrists need to be alert to this diagnostic possibility, especially in female adolescents and young adults, as exemplified by the real (de-identified) case outlined below. Earlier diagnosis and immunotherapy improves long-term outcomes. Collaboration with neurology colleagues is essential for optimal care. ‘Red flags’ for Autoimmune Encephalitis and ‘diagnostic clues’ act as helpful aide memoires for this uncommon condition. The gold standard for testing is the detection of NMDAR antibodies in cerebrospinal fluid, but serum can be tested as a more accessible (but less reliable) preliminary step. The results of routine blood tests, magnetic resonance imaging of the head and electroencephalograms can be normal or show non-specific changes. Diagnostic criteria exist to define probable and definite cases. Immunotherapy for anti-NMDAR encephalitis is effective for many patients, but recovery is prolonged and relapses can occur.

A notable addition to this research is the personally written account by the patient detailing their experience with anti-NMDAr encephalitis located in ‘Box 1’ within the paper.

woman in pain wearing mask covid

COVID-19 Clinician’s Corner

 

MOG-associated encephalitis following SARS-COV-2 infection

This is a case report of a 23-year old man with a history of childhood non-febrile seizures, presented to the hospital because of cognitive slowing and personality changes. Five weeks prior, he gradually developed a moderate but nearly constant, left-sided headache associated with dysesthesias. During this timeframe, he had known exposure to SARS-CoV-2 infected coworkers.

This case expands the spectrum of parainfectious neurological consequences associated with SARS-CoV-2 infection and highlights possible links between SARS-CoV-2 and autoimmune neurologic disease.

A variety of neurologic manifestations of COVID-19 infections have been reported. Here, we present a case of steroid-responsive MOG-antibody associated encephalitis, characterized by cognitive decline, headaches, fever, unilateral FLAIR-hyperintensities, and leptomeningeal enhancement, that occurred in the setting of recent COVID-19 infection.

image 15 - THE HERD July 1st edition

Relevance of Brain 18F-FDG PET Imaging in Probable Seronegative Encephalitis With Catatonia: A Case Report

 

For those of you with a sero-negative AE diagnosis (antibody negative) “probable/possible” AE. This just published research will be of interest.

Cerebral 18F-fluorodeoxyglucose PET imaging could be considered a relevant biomarker in the assessment of possible/probable seronegative autoimmune encephalitis associated with psychiatric manifestations that is an infrequent but complex clinical presentation in child and adolescent psychiatry, as it may be the only abnormal paraclinical exam. This noninvasive imaging test could help guide the diagnosis and early treatment of AIE, significantly impacting the prognosis of this serious illness.

AE Trivia Playing Cards

The perfect companion for patients, Caregivers & Therapist

trivia_fb

Doctor Recommended

Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  This deck answers 52 of the most commonly asked questions about AE and doubles as a rehabilitation tool.  Increase your knowledge and become a strong advocate quickly and easily with AE trivia cards. 

We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product. 

Shop & Support IAES Through PayPal’s #GiveAtCheckOut

Have you wanted to support IAES, Autoimmune Encephalitis awareness, and the AE Warrior that you love?

Here is an easy and affordable way to donate without feeling a thing when shopping with your Paypal account. Each time you check out you will be reminded of an opportunity to give $1 to IAES.

Simply go to your PayPal account and select “set favorite charity”, and choose International Autoimmune Encephalitis Society.  When you make a purchase and check out, an option comes up that asks if you would like to give $1 to IAES? 

Help create the positive change you envision for the AE Community by donating your change.

shop with Paypal-Facebook Post
amazonsmiles_IAES_general
Get that great deal online and support IAES at the same time!

When you shop Amazon Smiles and select IAES as the non-profit you want to support, Amazon will donate 5% of our purchases to the International Autoimmune Encephalitis Society.

This simple act of kindness, will support the work we do and advance our ability to service the community.

Smilematic, is a handy tool that will automatically redirect you to smile.amazon.com when you are shopping so you never have to worry about forgetting to type it in to ensure benefits go to IAES.

baC - THE HERD July 1st edition

Are YOU an IAES angel? Do you love someone with AE? Do you want to raise AE awareness to not just support AE Warriors but lead researchers to finding a cure?  The IAES Angel is someone who lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life.

IAES Angels are motivated by their Spirit of giving.  They are Champions in raising AE awareness. Your devotion to supporting our mission and improving the lives of those who suffer from AE is felt mightily and immediately put to use. 

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

mission2 - THE HERD July 1st edition
International Autoimmune Encephalitis Society is proud to be a platinum level participant on the Guide Star exchange, demonstrating or commitment to financial transparency.  IAES is a charitable non-profit 501 (c)(3) organization. Tax ID#81-3752344

Donations raised are greatly appreciated and directly support research, patients, caregivers, and families through their journey so the best outcomes can be reached.   Your contribution to our mission will help save a life and improve the quality of lives for others.  Be a part of the solution by supporting IAES.

guidestar-platinum-logo-300x300
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”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, 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.

NORD_MembershipLogo_Platinum 2021
image 23 - THE HERD July 1st edition

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

Autoimmune Encephalitis Trivia Playing Cards

Translate »