Don’t Be Left Behind. Keep Up With THE HERD!
Selected Highlighted News in the field of Autoimmune
Encephalitis July 2019 2nd edition
In this Issue~
- Upcoming Events: Texas, U.K, Worldwide Plasma Donation Drive
- Most Popular Article of the Month: Puzzling Brain Disease Could now be Better Diagnosed, Treated
- Most Popular IAES Printable Handout: Benefits of Cognitive Exercises for AE Patients
- Most Shared Post: Limbic Encephalitis, the brain functions affected and antibodies that cause it
- Clinician’s Corner: Diagnosing Autoimmune Limbic Encephalitis
- Open Access: Kid’s Waivers (U.S.A)
IAES is delighted to support the 2nd Annual Texas Children’s Hospital (TCH) Family Day of Strength event that will be held in Houston on July 27th from 11:30 to 5 pm. The group is led by Dr. Eyal Muscal.
‘Walk with the Baron 2 – Revenge of the blisters’ 3rd August 2019, to raise awareness for acquired brain injury and raise money for Ashby ward. This involves walking, running or cycling 26 miles (or however much you can manage). Staff from Ashby Ward will be meeting at The Plough on Newark Road at 10:00am and setting off together to start this 26 mile event! Joining the staff will be ex patients of Ashby Ward and their relatives, as well as the Baron himself, Andy Nicholson.
We are currently experiencing a plasma shortage in the U.S.A. and Worldwide. There simply isn’t enough plasma available to keep up with demand. This affects all patients with Autoimmune Encephalitis who receive IVIG as a life saving treatment, as well as other patients who require this treatment.
The need for plasma and plasma-derived products grows each year, but the complex nature of Ig [infusion] products … means that it takes time to increase the supply. It’s not as simple as making a more pill.
Manufacturing IVIG is complex and lengthy. It takes around six months from the time of the plasma donation to the delivery of the treatment to a patient. Each infusion takes a huge amount of plasma to treat an AE patient. ONE patient with ONE treatment of IVIG takes over 1,000 plasma donations!
The Solution: Donate plasma and have your friends, co-works, relatives donate as well.
IAES is encouraging everyone to get involved. Head a plasma drive or just take the time to donate yourself. Become a regular plasma donor if possible.
Go on the web and search for a plasma donation center near you. Often plasma donations provide a monetary benefit.
Until there is more plasma, AE patients may have to wait for an infusion which can result in a relapse of their disease or long hospital stay. Do a ‘simple act of kindness’ and donate today.
Most Popular Article of the Month~
Puzzling Brain Disease Could now be better Diagnosed, Treated
OHSU researchers have developed an animal model that may provide a path toward improving the diagnosis and treatment of the devastating brain disease chronicled in the bestselling autobiography, and subsequent movie, “Brain on Fire.”
Here’s how scientists are working to recognize early signs of the disease and to develop therapeutic approaches that could precisely target the site of NMDA receptors in the brain.
Most Liked and Shared IAES Post
AE is a group of disorders. Each type of AE is signified by the antibody that has been identified. But, about 45-50 % of us do not have an identified antibody. That is because the disease was first identified in 2007 (first published paper about patients Dalmau had in 2005), when Dr. Dalmau found the NMDAr antibody and BINGO! He put AE on the map. Since then researchers have identified about 2-3 antibodies a year.
The treatment protocol is the same. Some types of AE have different symptoms and syndromes. You will see at the top of this image the antibodies that affect the Limbic system. That’s most of us! Memory is our biggest issue and is often the last to come back/improve. Looking at what the limbic system controls, you can see just why you have the symptoms you do!
Diagnosing Autoimmune Limbic Encephalitis
Autoimmune limbic encephalitis is an inflammatory disease involving the medial temporal lobes; it classically presents with the subacute onset of short-term memory deficits, seizures or psychiatric symptoms.
Brain magnetic resonance imaging can show medial temporal lobe abnormalities typical of autoimmune limbic encephalitis in suspected cases, but clinicians should be aware of other diseases that may have a similar imaging appearance.
Analysis of both electroencephalogram (EEG) and cerebrospinal fluid can provide supportive evidence of neuro-inflammation in patients with suspected autoimmune limbic encephalitis, but a normal EEG or cerebrospinal fluid profile does not exclude the diagnosis.
Testing for antibodies to onconeural, cell-surface and synaptic proteins represents a major advancement in the diagnosis of autoimmune limbic encephalitis, although false-positives are possible.
Kid’s Waivers- Your source for Children’s Medicaid Waiver Programs
Caring for children with AE can be a full-time job especially when they first come home from the hospital. Below is a listing of state home care waiver programs that can provide assistance.
These programs often take time to work through the application process and get into place. So, if you feel that you and your child with AE will need help at home please ask staff at the hospital where you are being cared for to determine if you qualify and start the process. Even if you are not on Medicaid, once you qualify for the program based on needs, your child will qualify for Medicaid which can be used in addition to your insurance to cover medical costs.
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”, 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.