JUNE NEWSLETTER
Selected Highlighted News in the field of Autoimmune
Encephalitis June 2018 2nd edition
This issue includes: Texas Children’s Hospital holds Day of Education and Hope, Mayo study AE as common as Viral encephalitis, recent antibody in AE: GFAP, Worse outcomes with LGI1 indicators, importance of wearing a Medical Alert bracelet.
Eoin Flanagan, M.B., B.Ch., an autoimmune neurologist at Mayo Clinic in Rochester, Minnesota discusses groundbreaking population-based study,
Mayo Clinic has found that autoimmune encephalitis is as common as its infectious disease counterpart. The finding underlines the need for precise diagnostic testing for people with encephalitis, as the autoimmune and infectious diseases require different treatments.
“EXTRAPOLATING OUR RESULTS TO THE WORLD POPULATION SUGGESTS THAT ABOUT ONE MILLION PEOPLE ARE AFFECTED WITH AUTOIMMUNE ENCEPHALITIS,” DR. FLANAGAN SAYS. “THE DISEASE BURDEN FOR AUTOIMMUNE ENCEPHALITIS—A CONDITION THAT JUST 10 YEARS AGO WENT UNRECOGNIZED—IS SIGNIFICANT.”
Go to full discussions that were at the 70th American Academy of Neurology Annual Meeting.
New antibody identified in Autoimmune Encephalitis: GFAP
Phenotypes were diverse among patients that were serum positive only. Adult and pediatric clinical presentations were similar. Most patients were immunotherapy responsive. Co-existing NMDA-R-IgG and cancer were associated with lack of response to first-line immunotherapy. Among patients with follow-up information, 18% had relapses. This study demonstrates CSF GFAPα-IgG is a specific autoimmune meningoencephalomyelitis biomarker, with favorable corticosteroid response. Lack of response should prompt evaluation for co-existing NMDA-R-IgG or malignancy.
Elevated LGI1‐IgG CSF index predicts worse neurological outcome
Patients with a worse outcome 28 months after coming down with AE, (mRS > 2) were more frequently treated with both IVIg and steroids (56% vs. 17% of patients) suggesting an escalating treatment choice by the treating physician. Second‐line immunotherapies as maintenance treatments included mycopne, methotrexate, and cellcept, rituximab, azathioprihamide.
Be Safe! Wear a Medical Alert Bracelet
Wearing a medical alert bracelet can save your life. It can prevent an ER attending unfamiliar with Autoimmune Encephalitis from misdiagnosing you. Prevents Psychiatric holds. We urge EVERYONE to wear one. Two if you have more than one diagnosis, i.e. Epilepsy.
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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