JUNE NEWSLETTER
Selected Highlighted News in the field of Autoimmune
Encephalitis June 2018 1st edition
In this issue: Netflix release date of Brain on Fire, New laboratory AE testing from Mayo, Iphone app that tracks AE symptoms, Psychosis with Epilepsy, What is AE?
The long awaited Netflix release of the movie BRAIN ON FIRE is scheduled for June 22nd in the U.S.A. The film is based on Susannah Cahalan’s award-winning memoir: Brain on Fire, My Month of Madness. The movie tells the astonishing true story of her descent into madness, her family’s inspiring faith in her, and the lifesaving diagnosis that nearly didn’t happen. A fascinating look at autoimmune encephalitis. Brain on Fire is an unforgettable exploration of memory and identity, faith and love, and a profoundly compelling tale of survival and perseverance. The book and film has skyrocketed AE into the public square and has been responsible for countless patients being accurately diagnosed. We encourage everyone to watch and recommend this film so others may better understand the experience of what it is to be an AE Warrior and fight to reach recovery.
NEWS ALERT:
2 minute video:
Mayo Clinic neurologist Andrew McKeon, M.D., M.B., B.Ch., talks about the new autoimmune movement disorder evaluations in serum and spinal fluid available through Mayo Medical Laboratories.
Ataxia, PERM, Stiff persons spectrum disorders, DPPX (which he explains is a bio marker for several CNS disorders, Chorea, Myoclonus (muscle rigidity), and some mimics of Parkinsonism which usually manifest as brain stem AE.
Iphone app for Tracking your AE Symptoms
Tracking symptoms and how the person with AE is doing is really important. IAES highly recommends this iphone app. It is fabulous and EASY to use. You can put in your own symptoms and quickly note how you are doing when the app alerts you a few times a day. Once you set it up, it’s a matter of checking a box in regard to that symptom for time of day and severity. This way you can accurately report to your doctor and even e-mail them a chart of how you are doing with each of your symptoms. You can track if treatment is working and feel in control of being able to identify if symptoms are relapsing. It includes a place to list all the medications you are taking with dose and frequency and has an area to keep notes to self or for your doctor. Unfortunately, we have not found an equivalent app for android phone
10 minute Audio interview
about Psychosis and psychosis with epilepsy(which happens 8 fold higher than normal population). Psychosis happens with seizures with mesial temporal lobe/frontal temporal lobe/hippocampus involvement. Which is a common area in AE.
Spect and FDG-Pet scans that show hyperperfusion in the frontal temporal lobes (common with anti-NMDAr) should have doctors watching for psychosis being experienced by the patient.
What is Autoimmune Encephalitis?
Antibody Mediated Autoimmune Encephalitis is a rare disease that can be progressive or relapse-remitting. It is caused when the immune system makes auto-antibodies that are not supposed to be there. These auto-antibodies (aka antibodies) begin to attack healthy brain cells wrongly identifying those healthy brain cells as foreign. An autoimmune response is now occurring as the immune system attacks and destroys the brain’s healthy cells. Your own body’s immune system is attacking your brain. You are the victim of “Friendly fire”.
- antibody attacks by targeting special receptors in the brain that are on the cell surface, or exposed at the synapse of healthy nerve cells in the brain. Sometimes the antibody seeps inside the cell it is attacking. These antibodies bind to the healthy brain cell damaging or destroying them. Severe brain inflammation occurs. brain now malfunctions. All brain functions can be compromised: emotions, psychosis, memory, cognition, problem solving, speech, movement, seizures, balance, visual processing planning, sensory, hunger, thirst, behavior and personality traits, often followed by suppressed levels of consciousness and coma may occur.
AE is TREATABLE. Recovery is possible but most face years of treatment and rehabilitation. Many are left with various levels of brain injury.
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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