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.
As more antibodies in autoimmune encephalitis have been identified and with the increased knowledge about this group of diseases, Mayo Clinic has updated their antibody panel evaluations (Aug-31-2021).
Autoimmune Encephalitis Warriors, (patients) often require rehabilitation due to an acquired brain injury (ABI). The neurologist will refer the AE patient for a neuropsychological evaluation to see what areas of the brain are not functioning properly.
Living with AE
Deficits the patient experiences in cognitive domains show a slow and incomplete recovery and may slowly improve even years following the end of treatment. It is not uncommon for a patient to need several months of convalescence with intensive rehabilitation.
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!