theherd - THE HERD February 2020~ 2nd edition

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Selected Highlighted News in the field of Autoimmune

Encephalitis February 2020 2nd edition

In this Issue~

  • Announcements: Autoimmune Encephalitis Trivia Cards on Sale, Virtual Art Show, Rare Disease Day February 29th, AE Warrior Gifts
  • Most Popular Article of the Month: A Women who hallucinated the Mexican Cartel was hunting her was misdiagnosed with schizophrenia before doctors realized she had a rare and deadly immune disease
  • Most Popular Visual of the Month:  Autoimmune Encephalitis Medical Alert I.D. Card
  • New Website Page:  AE Warrior Gifts
  • Most Popular Video: AE Warriors Stepping Forward
  • Clinician’s Corner: Pediatric autoimmune encephalitis: Recognition and Diagnosis
  • Open Access:  Antibodyrelated movement disorders- a comprehensive review of phenotype-autoantibody correlations and a guide to testing
Trivia card ad 1 FB - THE HERD February 2020~ 2nd edition

Autoimmune Encephalitis Trivia playing cards is the first product in the world designed to educate patients, medical professionals, caregivers and friends about autoimmune encephalitis and act as an important patient rehabilitation tool all in one. 

Created by Tabitha Orth, IAES President and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE), AE Trivia cards answers the most common questions about AE. By supporting the cognitive deficits the AE patient has, AE Trivia breaks down information in an entertaining way so learning can occur. Color coding is used to support patients whose baseline starts with color and number matching and supports children’s games. As re-learning/re-training the brain advances other suggested games can be used. AE Trivia advances rehabilitation of brain functions such as long- and short-term memory, attention level, reading and reasoning skills, and cognition. Set includes 52 playing cards and 2 Jokers and a booklet on how to use the cards.

All proceeds will directly support Dr. Dalmau’s research group. This vital and groundbreaking tool is a must-have for all patients, caregivers, teachers, therapists, and loved ones.  On Sale Now at the introductory low price of $15 per deck. 

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This year’s Virtual Art Show in celebration of AE Awareness Month has been a resounding success. We had submissions from all over the world in a variety of mediums. The show will be available for viewing year-round and we encourage you all to set some time aside to take the tour. The submissions will astound and amaze you.
We would like to thank everyone who participated. The feedback we have received from people who have viewed the show has been so touching as people’s awareness of AE was raised through your eyes. 

You can now follow us on Instagram at intl_ae_society for educational and entertaining  visual information.

rare disease Day 2020 - THE HERD February 2020~ 2nd edition

 

AE awareness month ends with the celebration of #RareDiseaseDay on February 29th. Wear zebra stripes this Saturday to #ShowYourStripes in support of raising awareness for AE and others with a rare disease. Use hashtags #ShowYourStripes and #RareDiseaseDay to raise awareness.

 

Announcing New Website Page: AE Warrior Gifts

AE Warrior 2020 Certificate watermark - THE HERD February 2020~ 2nd edition

Check out special gifts you can give the AE Warrior, Mom, RN, Doctor, Child and Caregivers in your life. Take the opportunity to share your love and support in a way that is guaranteed to bring them a smile.

Most Popular Article of the Month~

A woman who hallucinated the Mexican Cartel were hunting her was misdiagnosed with schizophrenia before doctors realized she had a rare and deadly immune disease 

 

A woman who hallucinated the Mexican Cartel was hunting her was misdiagnosed with schizophrenia before doctors realized she had a rare and deadly immune disease. Brain inflammation and swelling lead to symptoms similar to psychosis. 

Samantha Redfield, of Angels Camp, California, suddenly began experiencing strange symptoms over a two-week period in October 2019.

She was rushed to hospital when she suffered a seizure, and over the next few days, began to hallucinate her sisters were dead and sob uncontrollably.

When brain scans and blood tests showed nothing was wrong, 30-year-old Mrs. Redfield was referred to a psychiatrist with suspected schizophrenia, by which point she hadn’t slept for ten days.

But the psychiatrist said there was something more sinister going on. She told Mrs. Redfield’s family to take her straight back to A&E.

Most Popular Visual of the Month~


medcard - THE HERD February 2020~ 2nd edition

IAES has designed a medial alert I.D. Card just for AE patients. This 2 sided card alerts to the diagnosis of AE as well as warns medical professionals that AE is refractory to anti-psychotic medications and may worsen symptoms.

Most Popular Video of the Month

AE Warriors Stepping Forward

AE Warriors Stepping Forward is dedicated to increasing awareness of autoimmune encephalitis by creating a ripple effect of positivity and empowerment for patients and their loved ones. IAES has purchased the rights to the song: Stepping Forward by Brown House Media. Autoimmune Encephalitis is a group of inflammatory brain diseases that are characterized by prominent neuropsychiatric symptoms. These patients often present with first-time out-of-the-blue psychosis and are often misdiagnosed with Bi-polar disorder or schizophrenia. Common clinical features include a change in behavior, psychosis, seizures, memory and cognitive deficits, abnormal movements, dysautonomia, and a decreased level of consciousness.

Psychiatrists and Emergency Room Physicians are often the first medical professionals who see these patients. It is vital that Clinicians consider the possibility of an autoantibody-related etiology and become familiar with the red flags suggestive of synaptic autoimmunity as the underlying cause in all cases of first-onset, out-of-the-blue psychosis. A high level of suspicion is necessary as autoimmune encephalitis is treatable with immunotherapy. 

 

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Clinician’s Corner

Pediatric autoimmune encephalitis Recognition and diagnosis

Besides anti-NMDAR encephalitis and ADEM, other AEs are rare in children. The current guideline to diagnose AE is also useful in children. However, in children with nonspecific symptoms, it is important to review data critically, to perform complete workup, and to consult specialized neuroinflammatory centers.

 

 

 

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Antibody-related movement disorders – a comprehensive review of phenotype-autoantibody correlations and a guide to testing

 

Autoimmune movement disorders with neuronal antibodies are an expanding field, with an ever-increasing number of new antibodies and syndromes.

This review focuses on clinical phenomenology of autoimmune movement disorders and highlighted core phenotypes and clinical red flags, which continue to guide the clinician to suspect an autoimmune movement disorder. Discussion on how characteristic phenotypes (like FBDS with LGI1-antibodies, or leg myoclonus affecting stance and gait with CASPR2-antibodies) or associated features (combined syndromes, e.g. chorea with neuropathy in paraneoplastic chorea with Hu- or CRMP5-antibodies) will suggest an autoimmune movement disorder. However, all described entities are neuroimmunological diseases that only rarely present with isolated movement disorders and usually, further clinical symptoms are present. Testing for neuronal antibodies to ascertain the diagnosis comes with its own pitfalls. Testing serum and CSF, as well as the use of different test systems, help to avoid wrong positive and wrong negative test results.

 

baC - THE HERD February 2020~ 2nd 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 February 2020~ 2nd 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.

seal2 - THE HERD February 2020~ 2nd edition

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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