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THE HERD June 2019~ 1st edition

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Selected Highlighted News in the field of Autoimmune

Encephalitis June 2019 1st edition

In this Issue~

  • Most Popular Article of the Month: NORD announces first of it’s kind caregiver relief program
  • Most Popular IAES Printable Handout: First Aide Tool Kit, Patient and Caregiver Resource Guide
  • Most Shared Post: Crossword puzzle by an AE Patient
  • Most Listened to Podcast: 5 Top Experts in AE on different topics
  • Clinician’s Corner: Elevated Serum and Cerebrospinal Fluid CD138 in Patients With Anti-N-Methyl-D-Aspartate Receptor Encephalitis
  • Open Access Research: GABAA receptor autoimmunity A multicenter experience

Most Popular Article of the Month~

This first-of-its-kind assistance program is designed for caregivers (parent, spouse, family member, or significant other) of a child or adult diagnosed with a rare disorder. NORD understands that caring for a loved one is a generous gift that demands significant amounts of time, attention, patience and dedication. The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from care-giving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or in a single use.

Every AE Patient/Caregiver Should download the revised Edition of IAES “First Aid Toolkit” Guide

Most Like and Shared IAES Post

People with AE are left with brain injury from their disease and some have lasting deficits from their disease. For example, patients with anti-NMDAr once in recovery have, on average, a 20% deficit over all and AE Warriors with LGI1 (the second most common type of AE) have 70% recovery with 30% lasting deficits in their executive functioning. When we are working on re-learning what we have lost and do exercises to help re-connecting those nerve pathways in rehabilitation, word finding games, mazes, cross words are often a part of that process. So when an IAES member sent us this, we thought we would share it with all of you. Sometimes humor is the best medicine when facing the challenges her have with our executive functioning.

Most Listened to Podcast:

This 1 hour podcast is great to listen to in the car, while exercising or gardening. 5 top favorite interviews from top experts in the field starting with: 

*First interview segment- Dr. Maarten J. Titulaer talks about Long-term neuropsychological outcome following pediatric anti-NMDAR encephalitis (title of research he wrote),

*2nd interview segment -Dr. Ramani Balu discussing A score that predicts 1-year functional status in patients with anti-NMDA receptor encephalitis. (paper written with same name). 

*followed by 2 back to back interviews with Dr. Andrew McKeon of Mayo Clinic Rochester : paraneoplastic syndromes and IgLON5 antibody autoimmune encephalitis. *Lastly a segment on Stiff Person’s Syndrome


Clinician’s Corner

Elevated Serum and Cerebrospinal Fluid CD138 in Patients With Anti-N-Methyl-D-Aspartate Receptor Encephalitis

Study included 27 with anti-NMDAR encephalitis, 11 with viral meningoencephalitis, and 22 controls. Results: Serum and CSF levels of sCD138 were significantly increased in patients with anti-NMDAR encephalitis. Furthermore, after 3–6 months of follow-up CSF sCD138 levels were significantly decreased in anti-NMDAR encephalitis patients. Changes in sCD138 levels were significantly associated with amelioration of modified Rankin Scale scores in patients with anti-NMDAR encephalitis. 

Conclusion: In anti-NMDAR encephalitis patients, high circulating, and CSF sCD138 is associated with inflammation and poor clinical prognosis. The present study suggests that sCD138 may be an informative biomarker of inflammation in anti-NMDAR encephalitis.

GABAA receptor autoimmunity A multicenter experience

New paper out from researchers at the Mayo Clinic on GABA A. In summary, GABA AR encephalitis should be considered in patients with encephalopathy and seizures (especially those refractory to antiepileptic drugs) with multifocal brain lesions on imaging. Prompt immunotherapy and neoplasm search should follow.

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.

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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