February NEWSLETTER
Selected Highlighted News in the field of Autoimmune
Encephalitis March 2019 2nd edition
SPECIAL EDITION ~ Dedicated to Raising Awareness for Autoimmune Encephalitis in Celebration of World Encephalitis Day (WED), Feb-22-2019:Tour our Virtual Art Show, Video: “You Are the Reason” WED AE Awareness, Events: Encephalitis411, Dallas, Texas, WED gathering. Most popular article of the Month: When You Can’t Stop Mourning the Person You Were Before Chronic Illness, iPAD/iPhone App: Speak4Me – Text to Speech, Clinician’s Corner: Intracellular and non-neuronal targets of voltage-gated potassium channel complex antibodies
Tour IAES’ First Annual Virtual Art Show in recognition of World Encephalitis Day (WED) this February 22nd, 2019. These poignant pieces of Art are accompanied by information about the artist and what the artist would like you to know about the work. In some cases, the artist had no drawing ability but experienced ‘an awakening’ of artistic talent attributed to the changes that occured in the brain due to autoimmune encephalitis.
You Are the Reason
IAES’ 3rd annual video that shines a light on Autoimmune Encephalitis in recognition of World Encephalitis Day February 22, 2019. We invite you to watch and share this video with friends and family and post it on all your social media platforms. Each share raises awareness and helps our message reach suffering patients who are undiagnosed or misdiagnosed and the Physicians who come in contact with them. A carefully written description accompanies the video that provides enough information to ensure a full neurological work up ensues for these patients. Your ‘share’ may be one that saves another life. IAES has purchased the rights to the song: You Are the Reason by J. Blanks
Encephalitis411.org is hosting an event in honor of World Encephalitis Day.
When: Saturday, February 23 from 1:30p to 4:30p
Please join in this special day, meet other Encephalitis Survivors and Autoimmune Encephalitis Warriors, exchange coping tips, learn from others, express concerns for needed treatments.
Where: Dallas, TX area: Free gathering with healthcare professionals.
LifePoint Church
4501 Hedgcoxe Road
Plano, TX 75024
Corner closest to Hedgcoxe and Preston Meadows Drive
RSVP to indicate # of attendees in your party
Contact: becky@encephalitis411.org, reply by text 1.833.411.3350
Speakers: Pate Rehabilitation and Center for Brain Health on topics of brain plasticity and rehab/treatment options
Research Participants Needed. Must have a confirmed diagnosis of Autoimmune Encephalitis and be between the ages of 18-26 Years :
Cori Preble Zdebel, is a Doctoral Candidate in Clinical Psychology at Fielding Graduate University, as well as a parent of a child diagnosed with Autoimmune Encephalitis and member of IAES.
Part of her research and dissertation involves the study of posttraumatic growth in emerging adults diagnosed with infective and autoimmune-mediated encephalitis. It is believed that an emerging adult who has experienced and endured the effects of a serious immune-mediated encephalopathy could provide important understanding and insights, particularly in how they understand their illness-experience, how they make sense of it, and how they cope or perhaps grow from their acquired disease.
To Participate in the Study: The total amount of time required to participate will take approximately one hour. Participants should be between the age of 18-26, speak English, and have been diagnosed with infective or autoimmune-mediated encephalitis for at least six-months.
The study includes two parts: 1) a short survey 2) an interview over Skype or phone . If you meet the above criteria and agree to participate, please press the button below. When getting to the survey page, select “Yes I Consent” and you will be directed to the informed consent form that will provide some important information before directing you to the survey.
Thank you very much for your time and interest in participating in this study
Most popular article of the Month:
When You Can’t Stop Mourning the Person You Were Before Chronic Illness
Jamie Jasinski expresses her struggles in this poignant article from THE MIGHTY where she says good-bye to her ‘old me’ as a part of her grieving process in accepting ‘the new me’ her chronic illness has caused. She writes in part, “Since I never was able to say farewell to the me before I got sick, I am taking this moment to do so now, and hoping that anyone else who has experienced similar feelings and situations will be brave enough to do this one day too. If I have discovered anything positive about myself throughout this journey, it’s that writing has been the best outlet for me in coping.” Read her Farwell letter.
Speak4Me – Text to Speech is a free app that can support patients when our eyesight is blurry (common with AE) or when we are too brain fatigued to read. A handy app that can save us from over taxing our brain and still accomplish our reading needs/desires/pleasures. The app speaks the text of your reading material clearly and the speed and tone can be adjusted, I wonderful solution to supporting deficits caused by AE. Simply import the reading material or copy and paste directly
Clinician’s Corner
Intracellular and non-neuronal targets of voltage-gated potassium channel complex antibodies
Just published:
Are you double-negative VGKC complex antibodies? Patients positive for LGI1 or CASPR2 are usually associate with distinctive immunotherapy-responsive syndromes. Data strongly suggest that they are directly pathogenic. In contrast, concerns have been raised about the clinical relevance of the double-negative VGKC complex antibodies that do not bind either of these proteins, particularly as they can be found in a proportion of patients with diseases which are unlikely to be of autoimmune aetiology.
Therefore, the findings described here are important because they use a systematic biochemical approach to demonstrate conclusively that a proportion of VGKC complex antibodies binds to intracellular VGKC epitopes, or to the non-mammalian-expressed αDTX. Discovery of these important antigenic targets should influence ongoing clinical practice, and prompt re-evaluation of several reports describing the clinical associations of patients with double-negative VGKC complex antibodies.
In summary, our results show that many double-negative VGKC complex antibodies lack pathogenic potential, and that direct examination of LGI1 and CASPR2 antibodies is more informative than first-line VGKC complex antibody testing. Also, direct LGI1 and CASPR2 antibody CBAs appear more sensitive than VGKC complex antibody or live neuronal antibody determination. Therefore, direct LGI1 and CASPR2 antibody assays are the preferred tests for clinical purposes. This approach should limit the use of unnecessary immunotherapies in double-negative patients.
Until all centers update their practices, treatment of double-negative cases should be limited to those with a high pretest probability of an underlying autoimmune condition.
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”.
