IAES is declaring a Public ‘Call to Action’ that people donate plasma due to the Nationwide/Worldwide IVIG shortage that is leaving patients in need of treatment. Locate a plasma donation center near you today. Donors are frequently offered a monetary benefit for their donation. Arrange a Plasma drive at work/school/place of worship. This affects the entire AE Community, many of them children. Many lives will be saved by your action today!
The product is intravenous immunoglobulin, abbreviated as IVIg, and administered to patients. IVIg is derived from plasma, the portion of blood that contains a plethora of vital proteins. Human blood plasma is in short supply, forcing hospitals to scramble to ensure the intravenously administered medication is available for patients who can’t live without it.
Recently, there has been a very dramatic shortage, and it has gotten worse because the use of IVIG has expanded to many other diseases/illnesses.
IAES and PennNeuroKnow (PNK) are excited to announce their partnership to help AE patients and their families understand the science behind their disease. PNK is a weekly blog run by PhD students at the University of Pennsylvania that aims to break down neuroscience topics for everyone to understand. In coming together, PNK will receive input from IAES about issues relevant to the AE community and create materials to address topics that non-scientists might have trouble understanding, ranging from general subjects like the immune system to specific practices like FDG-PET scans. Look for an upcoming blog article introducing the PNK team, and future handouts and blogs about various topics related to AE!
IAES has established February as Autoimmune Encephalitis
Awareness Month. An international event where the entire community shines a light on autoimmune encephalitis. Excitement is building! Watch for planned events and activities to be announced.
Empowering victims of Autoimmune Encephalitis and caregivers through support and education.
The International Autoimmune Encephalitis Society is a Family/Patient centered organization that assists patients from getting a diagnosis to recovery and the many challenges experienced throughout that journey.
The most common type of Autoimmune Encephalitis, anti-NMDA receptor Autoimmune Encephalitis (ANMDARE) which accounts for 20% of cases, was identified in 2005.
Through evaluations and testing, the clinician will eliminate the possibilities of what disease process is occurring with the patient.
Living with AE:
Autoimmune encephalitis (AE) can produce a very wide range of neuro-psychiatric symptoms. A major challenge in diagnosis is that different symptoms may appear at different times and different levels of intensity,
Gene Desotell of IAES was so caring and helpful. I appreciate everything IAES did to help me get the care I need. Now, I go to doctors and get my medications at no cost. I have a wonderful nurse who takes care of everything including rides to appointments if I need it. I can’t thank you enough!
An old and dear friend has been grappling with autoimmune encephalitis for some time, but I confess I was as clueless about the disease as most of us are, I suppose. All I knew was that she was quite sick, that doctors had not known much about it until recent years, and that some of that is starting to change. Also, she passed along a new newsletter designed and published by volunteers which is spreading the word about how victims are banding together and empowering each other through support activities and education. “You are not alone,” is the message, which is healing in itself. Fear, isolation and the discouragement of an uncertain future are awful and cold companions, so finding out that there are others who know what you’re going through is a huge gift.
I also spent a couple of careers in various forms of publishing and communications, and when Diane showed me the new newsletter, I was impressed. It is well designed, full of good information, and gives the feeling that there’s real energy behind this patient-centered educational effort. I know how much time and labor goes into this sort of thing. It has a very professional feel, which is all the more remarkable in that it’s put together by volunteers. It’s easy to subscribe, and if you or someone you know is a fellow AE sufferer, you ought to add this to your resources for dealing with the condition.
YOU are ALL so awesome!
Thank you VERY much for all that you do!
I hope that you all realize what a huge difference you are making in the lives of people running on their last once of strength.
I have seen many, many people join IAES since we did.
We thought that we were pretty much alone with this horrible disease but the compassion and the education we have found, as a direct result of your hard work, has made life a bit easier.
Thank you very, very much!
I’d like to extend my thanks to International Autoimmune Encephalitis Society for the guidance and advocacy they gave me throughout this difficult year. IAES has helped me more than they will ever know. Based on what IAES has done for me, I am sure that there are countless others who would say the same thing. Their passion for helping others is obvious. I don’t know what else I could ever say but thank you. IAES is a hero to a lot of people!
I remain so thankful for this non-profit organization. I seriously don’t know how I would have navigated all of the challenges of my daughter’s diagnosis without the experience and support shared by this organization and it’s members. This disease can be overwhelming, but I have been empowered by knowledge through their handouts and references/links to the latest research articles and podcasts. That, alongside the opportunity to connect with others who share a wealth of experience of living with AE, have made IAES invaluable to me and my family.
Christy Hasty Lewis
It is with sincere gratitude that I thank International Autoimmune Encephalitis Society for your dedication in not only advancing care and outcomes through educating the public and health care professionals but also in directly addressing the needs for the individuals you work alongside who are facing a diagnosis of AE. As I continue to work towards my professional goal of being a nurse educator and teaching our future generations of nurses, it is my hope that more nurses and providers have the tools and knowledge needed to recognize Autoimmune Encephalitis early on so that earlier diagnosis and intervention is possible. I will carry what I learned from all of you forward with me and close to my heart as a reminder of what we are fighting for.
Trystn K. Daley RN, BSN
When my 3-year-old son, Eren, was diagnosed with anti-NMDAr encephalitis in November 2017. We felt lost. I had never heard of this disease. It wasn’t until I found International Autoimmune Encephalitis Society that I no longer felt alone. I could rely on the volunteers within the organization and fellow members of their support group to help me understand what was happening and what to do. The neurologist who diagnosed my son did not schedule a follow-up appointment and felt no further treatment was needed two weeks after being discharged from the hospital.
IAES recommended getting a second opinion by an expert in AE. I Just came back from an appointment with one of the doctors on the IAES Doctor’s list. I feel so much relief! She is going to do an evaluation on our son next week, so she can see where he is and what the next steps should be. I feel like a black cloud has been removed from above me. I finally feel like there is hope for my boy. Thank you IAES! We would be lost without you!
I want to say Thank you to The International Autoimmune Encephalitis Society for leading me to a win over medicaid refusing rituxan. This organization did the heavy work with letters to HHS, calls, and anything I needed to help save my life. I am truly grateful and in awe that the power of strangers can change a life. Without their oversight I would have still been a number who was not taken as seriously. This has been a GIANT win. Love,
The IAES has been a huge resource for us! They recently walked us through an insurance appeal when our daughters insurance denied her life saving treatment! Within 48 hours I had all I needed in hand to appeal and win! This treatment was vital to our daughters care and the IAES has been a huge support in helping us advocate for her.
My daughter got Encephalitis just over a year ago. It has been a confusing and scary Journey. Good days and bad, happy and sad . This group helps so much and it is nice to know we are not alone. Thank you all and lets push forward.. Lets educate our selves and others. We hold hands and fight.
Tracey Anne Jeanette Rudwick
I’m so grateful to have found this support system. For anyone struggling through the world of autoimmune encephalitis, this is the place to be.
This organization saved my sanity as well as pointing me in the direction of much needed resources. Not your ordinary gossip blog. Real science, kind people, and understanding. Thanks, Zebras, for being here!
The International Autoimmune Encephalitis Society has been a great help to me and my fiance’ who is also my caregiver. the information they provide about the disease as well as treatments and doctors is extremely useful and helpful.
We have been very blessed to have the support of this group throughout my daughter’s health issues. The support and knowledge they have/ give is immense. Tabitha has been an absolute angel to my daughter and I. They give of their time so selflessly.
Stacy Pickell Smithson
This is a wonderful organisation which has provided much needed support after my son was diagnosed with AE.
This group has made dealing with this incredibly difficult and confusing disease bearable. They truly care about each of us and I personally know they will go out of their way tho help if at all possible. There are not enough thank yous for them. There combined knowledge is mind boggling.
Dana Wise Glaze
Amazing, a wealth of info and support.
Game changer in the world of unknown and illness.
The best and most reliable source of up-to-date information about autoimmune encephalitis. And also the only organization genuinely connecting AE-patients around the world. Without IAES it would have been a lot harder for me to understand my disease (Hashimoto’s encephalitis/encephalopathy) and recover back to normal life. Excellent volunteering
Mari E. Kiuru
My family is so blessed to have found the International Autoimmune Encephalitis Society. Here you will find a wealth of information on every aspect of this illness, and the Facebook group is the perfect place to have all of your questions answered by the most knowledgeable admins and group members. It is because of this group that my daughter’s neurologist was able to consult with two of the top doctors worldwide. AE is a horrible disease, but those affected will find not only the most up to date information and research, but also a community of much needed support from others who are or have been affected. We must be our own advocates on this journey, and the International Autoimmune Encephalitis Society empowers its members to do so.
Just a note to say thanks to our dedicated admins. They support us through dark times and keep us updated of all the newest research. Prayers to all the warriors and families that are fighting this monster.
Cody & Liz French
Since becoming a member of International AE Society, I have received so much information and support. They encouraged and supported our trip to Mayo clinic last year. The administrators in the Face Book support group are very involved and offer their support and guidance whenever I ask them. Their support makes a big difference in how I deal with my child’s disease. They have helped me realize that I’m not in this alone and together we can accomplish great things.
Stephanie Mulcahy Morrison
When I received a hospital bill for $47,000 that my insurance company refused to pay I turned to International Autoimmune Encephalitis Society for help. Int’l AE Society placed a complaint with the Hospital that they were in non-compliance with Federal statutes requiring that Nonprofit Hospitals not profit. As weeks passed, IAES went up the ladder and filed a complaint with the State of California Health and Human Services for noncompliance with Federal statutes. The hospital was told that if they did not comply with their nonprofit requirements, their nonprofit status could be removed and they would forfeit 100s of millions of dollars in write offs annually.
Next, International Autoimmune Encephalitis Society notified the Chief Financial Officer of the hospital that an IRS complaint would be filed requesting nonprofit status be revoked and they would be made to pay taxes now as if they were a profitable enterprise.
The very next day, International Autoimmune Encephalitis Society called me to let me know that they had received a phone call from the Chief Financial Officer for the hospital. He was very sorry! The hospital was waiving my entire hospital bill of $47,000!! Without the help I received from IAES, my family would have had to refinance our home. We are forever grateful.
We are blessed to have found the tremendous support of the International Autoimmune Encephalitis Society. The medical, scientific, and emotional support found here is unlike anything on the internet. You are the single best, most thorough, comprehensive and supportive site on the Internet- thank you! Together, I know we will beat this dreadful disease!
I think you are great and do a wonderful service for people who need to navigate this difficult conglomerate of illnesses and are an excellent source for information and support and friendship.
When I discovered my insurance was rejecting my son’s $25k (!) hospital bill for rituxan, the International Autoimmune Encephalitis Society helped me sort through and make sense of a convoluted mess that was utterly confusing to me. They analyzed the EOBs and guided me on what questions to ask when I wasn’t getting adequate answers. Importantly, they identified that the wrong CPT codes were being used on our bill — something that a run-of-the-mill parent or even a more general patient advocate may not be steeped in. They guided me on my appeal letter, bolstering me with studies about medically necessity. They also helped me analyze my finances to understand what I was legally responsible for on the bill. And ultimately, I got the wonderful news that insurance was covering the bill!
I found this group when my dear husband was diagnosed with HE secondary to AE in Oct 2017. With no knowledge of his illness, I’ve learned a lot about it from this informative group. I also learned as a care giver and patient advocate, I was not alone. Over the past 2 years there have been multiple inpatient admissions, (some stormy) treatments, and a trip to Mayo; to top it off he ended up with some major blood clots. (One was in his supraventricular (main artery by his heart)). I received a wrongful termination while on an approved paid leave of absence. In the end any employer who has wrongfully terminated you against ADA (Americans with Disability Acts) a file can be charged. I refused to let my husband die for any employer. Because of my persistence, determination and never giving up on him, he is finally in REMISSION (Something I honestly thought I would never have the honors of saying). In December 2019, if approved by the American Cardiology Physicians, his case will be published in their book. (His story how he overcame the severe blood clots when he was 2 mins away from death’s door). We will be receiving a copy as well. To all patient’s, caregiver’s, patient advocates, family and friends, Please do not GIVE UP- You’re all the real heroes. Remember: Please don’t ever give up on your love one or doubt yourself! You’re doing what’s right and in the best interest of the patient. God sees this and you’re not alone. To this wonderful informative group Thank you is not enough for all of your time, efforts, support, information, your undivided attention to each and every one of us. #thankful#grateful#blessed