theherd - THE HERD November 2020~ 1st edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis November 2020 1st edition

In this Issue~

* Announcements: National Family Caregiver Month, Survey on the impact of COVID-19 & autoimmune diseases, AE Warrior Store
*Children’s Corner:  Clinical and MRI Outcome Predictors in   Pediatric Anti-NMDA Receptor Encephalitis, Thanksgiving Word Search Puzzles 
*Most Popular Visual of the Month: AE Treatment, Dose & Side effects, Autoimmune Encephalitis Infographic Poster, Stop. Someone in this house has a Weak Immune System poster
*COVID-19’s Impact on the AE Community: Age groups that sustain resurging COVID-19 epidemics in the United States,  Medical group says ‘hundreds of thousands’ of COVID-19 deaths possible if ‘nation does not change its course’
*Most Popular Download: IVIG treatment what to Expect, How IVIG Works
*Featured AE Articles: Caregiver Tips, Neuropsychiatric symptoms and caregivers’ distress in anti-N-methyl-D-aspartate receptor encephalitis, The Dementia that can be Cured
*Clinician’s Corner: A Pounding Problem: A Case of Recurrent Headache Caused by Anti-NMDA Receptor Encephalitis
*COVID-19 Clinician’s Corner: Guillain-Barré syndrome: The first documented COVID-19–triggered autoimmune neurologic disease
*Open Access: Clinical, cognitive and neuroanatomical associations of serum NMDAR autoantibodies in people at clinical high risk for psychosis

Announcements

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National Family Caregiver Month – November 2020

November is National Caregiver’s Month.  IAES is encouraging AE patients (i.e. AE Warriors) to send in written submissions sharing how much you appreciate your caregiver and what their support means to you to be featured in a special IAES Blog in ‘Tribute to Our Caregivers’.

AE patients would not enjoy the lives we have or make as much progress as we do if not for those who care for us and love us.  Join us in singing their praise and raising your voice for our unsung heroes, our caregivers. 

Help us shine a light on how much we appreciate our caregivers for the dedication and sacrifice they selflessly give 24/7. 

E-mail your submission to IAES@autoimmune-encephalitis.org with the ‘Caregiver Tribute’ in the regarding line. We will do the editing and put them together.

 

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Survey: Emotional, Social, and Physical Impact of COVID-19 on the Autoimmune Disease Community

Thank you for participating in my study about the emotional, social, and physical impact of COVID-19 on the Autoimmune Disease community and how patients attempt to cope with their disease. My name is Scott Weitman and I am a 17-year-old high school student living with an autoimmune disease called alopecia areata. Alopecia areata causes me to lose my hair and I was devastated by being a student with no hair.

The goal of my survey-based project is to analyze the emotional, social, and physical impact of COVID-19 on autoimmune disease patients as well as identifying effective coping strategies for people living with an autoimmune disease.

Important information to know before beginning the survey:
-The purpose of this study is to:
-gain insight into the emotional, social, and the physical impact of COVID-19 on autoimmune diseases.
-gain insight into how people attempt to cope with their autoimmune disease.
-share effective coping strategies with people struggling with an autoimmune disease.
-The survey will take approximately 10 minutes to complete.
-The survey is for anyone above the age of 7 years old.
-If the participant is younger than 18 years old they have to have parental consent.
-An asterisk* means that the question is required.

 

Raise Awareness by Shopping at the AE Warrior Store

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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. 

Children’s Corner 

Clinical and MRI Outcome Predictors in Pediatric Anti-NMDA Receptor Encephalitis

This Open Access article is recently published. Interpretation: Children with NMDARE exhibit significant brain volume loss and failure of age-expected brain growth. Abnormal MRI findings, a clinical presentation with sensorimotor deficits, and a treatment delay >4 weeks are associated with worse clinical outcome. These characteristics represent promising prognostic biomarkers in pediatric NMDARE.

Thanksgiving Word search puzzles for Cognitive Exercise and Rehabilitation

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Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from AE.

These Thanksgiving word search puzzles feature hidden Thanksgiving words to find and a picture to color. The word search puzzles are printable. Word searches are great activities to help your kids develop their problem solving and analytical skills.

The ones offered here range from easy>medium level of difficulty>hard>super hard.

 Choose other fun and educational activities to keep your kids busy.  Coloring pages connect the dots, crafts, crossword puzzles, maze worksheets, pattern worksheets, story starters, sudoku puzzles, word decoders, and word scrambles are all here for your children to try while working on rehabilitation from brain injury caused by their AE.

 

Most Popular Download

AE Treatments, Dose, Frequency, Side Effects & Lab Monitoring

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Autoimmune Encephalitis Infographic Poster

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Poster: Stop Someone in This House Has a Weak Immune System

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Covid-19

COVID-19’s impact on the AE Community

Age groups that sustain resurging COVID-19 epidemics in the United States

 

Conclusions: 1. “We estimate by November 24 2020 a 253.7% increase in infections among children aged 0-11, and 24 excess COVID-19 attributable deaths among children aged 0-11, resulting in pediatric COVID-19 attributable mortality figures that are similar to pediatric influenza-like mortality. The forecasts further estimate 6,181 excess COVID-19 attributable deaths in the total population, which is a 12.6% increase compared to the continued school closure scenario, by November 24, 2020.” 2. “Adults aged 20-49 are a main driver of the COVID-19 epidemic in the United States; yet, in areas with resurging epidemics, opening schools will lead to more COVID-19-aƩributable deaths, so more targeted interventions in the 20-49 age group could bring epidemics under control, avert deaths, and facilitate the safe reopening of schools.”

Medical group says ‘hundreds of thousands’ of COVID-19 deaths possible if ‘nation does not change its course’

 

 

“Despite working together as a nation to ‘flatten the curve,’ the United States is experiencing troubling new waves of infection. Instead of declining, the numbers of new cases, hospitalizations, and deaths, especially among vulnerable groups and communities of color, are growing rapidly. Particularly worrisome are the increases in infections among people in their 20s and 30s, who play a pivotal role in spreading the virus to older and other vulnerable populations,” the group said.

Most Popular Visual~

 

 

 

 

 

 

IVIG Treatment and What to Expect

 

 

IVIG

How IVIG Works 

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Featured AE Articles~

Caregiver Tips

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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

Objective: To explore the characteristics of psychiatric symptoms and caregivers’ distress in anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis. 

Methods: Seventy-two patients with anti-NMDAR encephalitis were investigated in Peking Union Medical College Hospital from 2011 to 2018. The Chinese version of the Neuropsychiatric Inventory-Questionnaire (NPI-Q) was used to assess the severity of neuropsychiatric symptoms and caregivers’ distress around the treatment. 

Results: A highly positive correlation existed between severity scores of neuropsychiatric symptoms and caregiver distress and pre- and post-treatment correlation coefficients was 0.872 and 0.947, respectively (all P<0.001). The frequency of 12 symptom domains was higher than 45% before treatment, however, it significantly reduced to below 45% after treatment. Irritability/lability, agitation/aggression were the most common neuropsychiatric symptoms. Irritability/lability, agitation/aggression, and nighttime behavioral disturbances occurred concurrently. Patients with severe symptoms tended to be administrated antipsychotics (Z=-2.581, P=0.01). Neuropsychiatric symptoms significantly improved after immunotherapy (Z=-6.611, P<0.001). There was no significant difference in the symptom severity and distress subscale scores between the first episode and relapse around the therapy (P>0.05). 

Conclusion: 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.

The Dementia that can be Cured

Dr. Irani at Oxford and some of our cherished AE experts at Mayo Clinic Rochester, MN, Dr. Sean Pittock and Eoin Flannagan, discuss Autoimmune Dementia and share the stories of two cases. Andrew with LGI1 AE and Pippa with anti-NMDAr AE.

Dementia is not just one disease – it has more than 200 different subtypes. Over the past decade, neurologists have become increasingly interested in one particular subtype, known as autoimmune dementia. In this condition, the symptoms of memory loss and confusion are the result of brain inflammation caused by rogue antibodies – known as autoantibodies – binding to the neuronal tissue, rather than an underlying neurodegenerative disease. Crucially this means that unlike almost all other forms of dementia, in some cases it can be cured, and specialist neurologists have become increasingly adept at both spotting and treating it.

The main telltale clue was the speed of onset, one of the key distinguishing features of autoimmune dementia. “The symptoms usually come on very quickly,” Irani says. “Over a few weeks or months, patients develop memory problems and change their behavior and personality. Patients with neurodegenerative forms of dementia can develop movement disorders or seizures, but this typically happens later in the illness once degeneration has set in. In autoimmune dementia, these are early problems.”

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Clinician’s Corner

A Pounding Problem: A Case of Recurrent Headache Caused by Anti-NMDA Receptor Encephalitis


Case report: A previously healthy 25-year-old woman presented on several occasions to the Emergency Department with a severe pounding headache that initially responded well to treatment. She later developed signs consistent with meningoencephalitis along with altered mental status and neuropsychiatric changes. She was diagnosed with anti-NMDAR encephalitis after hospitalization.

WHY SHOULD AN EMERGENCY PHYSICIAN BE AWARE OF THIS?:

Anti-NMDAR encephalitis is an under-recognized condition with diverse presentations. Recurrent headaches that improve with treatment may be an early sign of this disorder. Anti-NMDAR encephalitis should be considered in patients with recurrent undifferentiated headaches, and an appropriate work-up should be performed. Early recognition and diagnosis of this condition is critical to optimize favorable patient outcomes, as delays to diagnosis may lead to fatalities and long-term neurologic sequelae.

 

woman in pain wearing mask covid

COVID-19 Clinician’s Corner

Guillain-Barré syndrome: The first documented COVID-19–triggered autoimmune neurologic disease

Objective: To present the COVID-19–associated GBS, the prototypic viral-triggered autoimmune disease, in the context of other emerging COVID-19–triggered autoimmunities, and discuss potential concerns with ongoing neuroimmunotherapies.

Results: Collective data indicate that in this pandemic any patient presenting with an acute paralytic disease-like GBS, encephalomyelitis, or myositis-even without systemic symptoms may represent the first manifestation of COVID-19. Anosmia, ageusia, other cranial neuropathies and lymphocytopenia are red flags enhancing early diagnostic suspicion. In Miller-Fisher Syndrome, ganglioside antibodies against GD1b, instead of QG1b, were found; because the COVID-19 spike protein also binds to sialic acid-containing glycoproteins for cell-entry and anti-GD1b antibodies typically cause ataxic neuropathy, cross-reactivity between COVID-19–bearing gangliosides and peripheral nerve glycolipids was addressed. Elevated Creatine Kinase (>10,000) is reported in 10% of COVID-19–infected patients; two such patients presented with painful muscle weakness responding to IVIg indicating that COVID-19–triggered NAM is an overlooked entity. Cases of acute necrotizing brainstem encephalitis, cranial neuropathies with leptomeningeal enhancement, and tumefactive postgadolinium-enhanced demyelinating lesions are now emerging with the need to explore neuroinvasion and autoimmunity. Concerns for modifications-if any-of chronic immunotherapies with steroids, mycophenolate, azathioprine, IVIg, and anti-B-cell agents were addressed; the role of complement in innate immunity to viral responses and anti-complement therapeutics (i.e. eculizumab) were reviewed.

Conclusions: Emerging data indicate that COVID-19 can trigger not only GBS but other autoimmune neurological diseases necessitating vigilance for early diagnosis and therapy initiation. Although COVID-19 infection, like most other viruses, can potentially worsen patients with pre-existing autoimmunity, there is no evidence that patients with autoimmune neurological diseases stable on common immunotherapies are facing increased risks of infection.

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Clinical, cognitive and neuroanatomical associations of serum NMDAR autoantibodies in people at clinical high risk for psychosis

 

 

Serum neuronal autoantibodies, such as those to the NMDA receptor (NMDAR), are detectable in a subgroup of patients with psychotic disorders. It is not known if they are present before the onset of psychosis or whether they are associated with particular clinical features or outcomes. In a case-control study, sera from 254 subjects at clinical high risk (CHR) for psychosis and 116 healthy volunteers were tested for antibodies against multiple neuronal antigens.  Preliminary phenotypic analyses revealed that within the CHR sample, the NMDAR antibody seropositive subjects had higher levels of current depression, performed worse on the Rey Auditory Verbal Learning Task (p < 0.05), and had a markedly lower IQ (p < 0.01). NMDAR IgGs were not more frequent in subjects who later became psychotic than those who did not.

In this study, NMDAR antibodies did not predict transition to psychosis, as defined by operationalized criteria, or nonremission from the CHR state. NMDAR antibody seropositivity was however associated with a deterioration in disability-associated functioning, short of transition and indeed greater antibody titre was associated with greater deterioration in function, overall suggesting that NMDAR antibody serostatus should be further evaluated as a predictive marker of functional outcome.

AE Trivia Playing Cards

The perfect companion for patients, Caregivers & Therapist

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Visit our AE Warrior store to see a variety of products designed to raise AE awareness and support research. 

The proceeds from your purchase will immediately support autoimmune encephalitis patients, caregivers, and families who are walking this difficult journey. 

 

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During the COVID-19 pandemic, it is vitally important that you #StayHome and practice #SocialDistancing. Grocery shopping, as well as all shopping, should be done online.

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.

The need for our services has increased exponentially. This simple act of kindness, will support the work we do and advance our ability to service the community.

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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 November 2020~ 1st edition

Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may 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.

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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.

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


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

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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