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Selected Highlighted News in the field of Autoimmune

Encephalitis August 2019 1st edition

In this Issue~

  • Upcoming Events: Worldwide Plasma Donation Drive due to shortage
  • Most Popular Video of the Month: IAES’ Recognizing signs at onset, Diagnosis and Treatment
  • Most Popular IAES Printable Handout: A letter from your Brain
  • Most Shared Post: Snoopy writes to Drs. Graus and Dalmau
  • Clinician’s Corner: An update on anti-NMDAr encephalitis for Neurologists and Psychiatrists: Mechanisms and Models
  • Open Access:  Mayo clinic has identified a new antibody in Neurologic Paraneoplastic Autoimmunity

We are currently experiencing a plasma shortage in the U.S.A. and Worldwide. There simply isn’t enough plasma available to keep up with demand. This affects all patients with Autoimmune Encephalitis who receive IVIG as a life saving treatment, as well as other patients who require this treatment. 

The need for plasma and plasma-derived products grows each year, but the complex nature of Ig [infusion] products … means that it takes time to increase the supply. It’s not as simple as making a more pill. 

Manufacturing IVIG is complex and lengthy. It takes around six months from the time of the plasma donation to the delivery of the treatment to a patient. Each infusion takes a huge amount of plasma to treat an AE patient. ONE patient with ONE treatment of IVIG  takes over 1,000 plasma donations! 

The Solution: Donate plasma and have your friends, co-works, relatives donate as well. 

IAES is encouraging everyone to get involved. Head a plasma drive or just take the time to donate yourself. Become a regular plasma donor if possible. 

Go on the web and search for a plasma donation center near you.  Often plasma donations provide a monetary benefit. 

Until there is more plasma, AE patients may have to wait for an infusion which can result in a relapse of their disease or long hospital stay. Do a ‘simple act of kindness’ and donate today.

Most Popular Video of the Month~

Recognizing signs of Onset, Diagnosis and Treatment~an IAES video

Autoimmune Encephalitis (antibody mediated) A brief introduction of what may occur, the evaluations that are needed to arrive at a diagnosis and overview of treatment protocol. Sharing and tweeting this video may save a life. Length: 3:34 minutes

 

Most Liked and Shared IAES Post

Snoopy writes Drs. Graus and Dalmau

Dear Drs. Graus and Dalmau,
I want to thank you for your detailed and well documented paper: “A Clinical Approach to the Diagnosis of Autoimmune Encephalitis”. 
The researchers who joined you in this collaboration have all established themselves as experts in the field due to their contributions and discoveries in autoimmune encephalitis. This makes this piece of work all the more valuable to Neurologists and Neuroimmunologists who will have these patients in the future. 
I shared this piece with International Autoimmune Encephalitis Society when it was first published, and they have continued to make sure the Autoimmune Encephalitis community is aware of your findings. IAES also encourages their members to share this work with their Neurologist.
Sincerely,
Snoopy

 

 

Clinician’s Corner

An update on Anti-NMDA receptor encephalitis for Neurologists and Psychiatrists: mechanisms and models

The identification of anti-NMDA receptor (NMDAR) encephalitis about 12 years ago made it possible to recognise that some patients with rapidly progressive psychiatric symptoms or cognitive impairment, seizures, abnormal movements, or coma of unknown cause, had an autoimmune disease. In this disease, autoantibodies serve as a diagnostic marker and alter NMDAR-related synaptic transmission. At symptom onset, distinguishing the disease from a primary psychiatric disorder is challenging. The severity of symptoms often requires intensive care. Other than clinical assessment, no specific prognostic biomarkers exist. The disease is more prevalent in women (with a female to male ratio of around 8:2) and about 37% of patients are younger than 18 years at presentation of the disease. Tumours, usually ovarian teratoma, and herpes simplex encephalitis are known triggers of NMDAR autoimmunity. About 80% of patients improve with immunotherapy and, if needed, tumor removal, but the recovery is slow. Animal models have started to reveal the complexity of the underlying pathogenic mechanisms and will lead to novel treatments beyond immunotherapy. Future studies should aim at identifying prognostic bio-markers and treatments that accelerate recovery.

 

 

Mayo Clinic has identified a new novel (rare) antibody biomarker of neurologic paraneoplastic autoimmunity

PDE10A IgG defines a novel rare neurologic autoimmune syndrome and expands the spectrum of diagnosable paraneoplastic CNS disorders. The intracellular location of PDE10A suggests a T-cell-mediated pathology targeting cells displaying MHC1-bound PDE10A peptides. 

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.

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. Tax ID# 81-3752344 Donations raised directly supports 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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