October NEWSLETTER
Selected Highlighted News in the field of Autoimmune
Encephalitis October 2018 1st edition
Download this valuable Handout that explains the brain injury you have sustained from your AE., Encephalitis Research Engagement Day 2018 in Oxford, U.K., The need to ensure outcomes are accurately recorded for AE patients who receive IVIG treatment., Autoimmune Encephalitis occurred in 27% of patients with herpes simplex encephalitis in recent study.
Help friends, family, teachers and employers understand the brain injury you have incurred from your Autoimmune Encephalitis. Download this helpful .pdf
Encephalitis Research Engagement Day 2018
Mark your calendars for November 20 if you are in the United Kingdom, Oxford area!
Do you want to find out more about Autoimmune Encephalitis? Meet the Doctors at the Oxford Autoimmune Neurology Group who do the research on autoimmune encephalitis for a fun and engaging day. You will learn more about the science behind the treatments you receive. Come and hear perspectives from patients, carers and clinicians. This is the 2nd year for this event and tickets are still available.
Use of intravenous immunoglobulin for the treatment of autoimmune encephalitis: audit of the NHS experience
Dr. Irani of Oxford Autoimmune Neurology Group, and one of the authors of this paper has expressed: “We really need to find a way to ensure outcomes are accurately recorded while securing the treatment for patients who require it.”
Participants in study-
Hospital in-patients with confirmed or suspected autoimmune/limbic encephalitis between September 2010 and January 2017.
Results
A total of 625 patients who were 18 years of age or older were treated with intravenous immunoglobulin for autoimmune encephalitis, of whom 398 were determined as having ‘highly likely’ or ‘definite’ autoimmune/limbic encephalitis. Ninety-six percent were treated with a single course of intravenous immunoglobulin. The availability and accuracy of reporting of outcomes was very poor, with complete data only available in 27% of all cases.
Conclusions
This is the first review of data from this unique national database. Whilst there was evidence for clinical improvement in many cases of patients treated with intravenous immunoglobulin, the quality of outcome data was generally inadequate
Frequency, symptoms, risk factors, and outcomes of
autoimmune encephalitis after herpes simplex
encephalitis: a prospective observational study and
retrospective analysis
New Study out by Dr. Dalmau and associates, featured in the Lancet last month, on behalf of the
Spanish Herpes Simplex Encephalitis Study Group.
The results of our prospective study show that autoimmune encephalitis occurred in 27% of patients with herpes simplex encephalitis. It was associated with development of neuronal antibodies and usually presented within 2 months after treatment of herpes simplex encephalitis; the symptoms were age-dependent, and the neurological outcome was worse in young children. Prompt diagnosis is important because patients, primarily those older than 4 years, can respond to immunotherapy.
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”.
