January NEWSLETTER

Selected Highlighted News in the field of Autoimmune

Encephalitis January 2019 1st edition

In This Issue: IAES is currently accepting Art for Virtual Art Show in honor of World Encephalitis Day (WED) 2019, Highly recommended feature article: Decreased occipital lobe metabolism by FDG-PET/CT An anti–NMDA receptor encephalitis biomarker Most popular article of the Month: ‘It’s taken my identity’, Clinical Trials for AE, Strategy for staying positive while battling AE,Clinician’s Corner: An evolving redefinition of autoimmune encephalitis

International Autoimmune Encephalitis Society is holding A Virtual Art Show in recognition of World Encephalitis Day (WED) this February 22nd, 2019.

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The IAES Virtual Art Show will showcase art of patients with autoimmune encephalitis, their family members, loved ones and Caregivers. Open to All ages.. Art should be representative of how Autoimmune Encephalitis has affected them.

All art mediums are welcome; pencil, coloring, painting, watercolor, fabric, clay, Photography, whatever medium the artist wants to use to express themselves.

Highly Recommended Article this issue:  noninvasive, early biomarker of anti–NMDA receptor encephalitis

Decreased occipital lobe metabolism by FDG-PET/CT

An anti–NMDA receptor encephalitis biomarker

FDG-Pet findings in anti-NMDAr compared to patients with definite AE.

Brain FDG-PET/CT is commonly abnormal in anti–NMDA receptor encephalitis, most often demonstrating marked hypometabolism of the medial occipital lobes. This marked hypometabolism of the medial occipital lobes is relatively unique to anti–NMDA receptor encephalitis compared with other forms of definite AE, particularly in those with greatest neurologic disability. Among patients with anti–NMDA receptor encephalitis, marked lateral and medial occipital lobe hypometabolism is evident in those with severe neurologic disability compared with those less disabled. While detection of the anti–NMDA receptor antibody in the CSF serves as the diagnostic biomarker of choice, medial occipital hypometabolism could potentially serve as a unique, noninvasive, early biomarker of anti–NMDA receptor encephalitis, with utility in diagnosis as well as monitoring of clinical improvement.

‘It’s taken my identity’: Woman brings awareness to rare brain disease

Stephen Gutierrez is working hard to raise public awareness for Autoimmune Encephalitis. His wife, Lorina, came down with the most common type of AE, anti-NMDAr encephalitis, in February 2018. Both are active members of International Autoimmune Encephalitis Society. 
Sharing Lorina’s story is the couples’ first step taken to help bring the discussion about this treatable disease to the general public’s attention. The couple continues to take many more steps to that end by planning a Walk for Awareness later this year that IAES has happily agreed to sponsor.

Clinical Trial For Autoimmune Encephalitis

Have you thought about looking into Clinical Trials for Autoimmune Encephalitis?

You will find this link to Clinical Trials on the ‘How to Appeal Insurance Denial’ page of our website.

Taking part in a clinical trial is a way to receive treatment for AE at no cost. The patient may, in some cases, have access to testing and scans that are not yet available to the public. All treatment and testing when you are involved in a clinical trial are free and you are often paid a stipend for participating.

See if a clinical trial is near you that you might qualify for.  Discuss this with your Neurologist as well, so they keep abreast of Clinical Trials on your behalf.

Check into the announcements of clinical trials regularly to keep informed of updates.

Battling autoimmune encephalitis is such a huge challenge.  It is difficult for us to remember the positive things we experience when each day is filled with coping with the symptoms of our disease and adjusting to ‘the new me’.  So, we wanted to share this idea as we feel it can be a helpful tool to aid you through those difficult times. You can model this example of a ‘grateful jar’ and create your own jar with a different focus that meets your needs.  You can make a jar filled with what you are grateful for. Parents can fill a jar with notes of encouragement, praise, comment on accomplishments. Maybe you decide to make a ‘happy memories’ jar or jot down something you did that represents improvement in your AE journey.  Since our memories are affected by AE, reminding ourselves of any progress reinforces encouragement that we are moving forward.  Be creative. You may decide everyone in the family can add to the jar. Think about what you need or your loved one would appreciate and create around that.

Of course, you can dip into the jar and randomly read notes throughout the year when the need arises. Start 2019 off with a positive note – literally – and deposit it in your jar.

Clinician’s Corner

An evolving redefinition of autoimmune encephalitis

This abstract from Pediatric researchers in Italy was published Dec 18th.

Autoimmune encephalitis encompasses a wide variety of protean pathologic processes associated with the presence of antibodies against neuronal intracellular proteins, synaptic receptors, ion channels and/or neuronal surface proteins. This type of encephalitis can also involve children with complex patterns of seizures and unexpected behavioral changes, which jeopardize their prompt recognition and treatment. The spectrum of neuropsychiatric manifestations in the pediatric population with autoimmune encephalitis is less clear than in adults.

In this review we report the most relevant data about both immunologic and clinical characteristics of the main autoimmune encephalitides recognized so far, with the aim of assisting clinicians in the differential diagnosis and favoring an early effective treatment. Correlations between phenotype and autoantibodies involved in the neurological damage of autoimmune encephalitis are largely unknown in the first years of life, because of the relatively small number of pediatric patients adequately studied. Future multicenter collaborative studies are needed to improve the diagnostic approach and tailor personalized therapies in the long-term

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”, 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.  Raising awareness of Autoimmune Encephalitis across the many specialties of medicine that come in contact with these disorders and with the general public to ensure a timely and accurate diagnosis resulting in an aggressive treatment plan for best outcomes.

“Empowering victims of Autoimmune Encephalitis and their caregivers through Support and Education”.