July 5, 2018 | Gene Desotell, BA Administration of Justice and Sociology
Co-founders Gene Desotell and Tabitha Andrews Orth
Each month the IAES Blog will be featuring one of our volunteer Administrators working in the IAES Educational Facebook Support Group. The educational support forum is specifically designed for people who have received a confirmed diagnosis of Autoimmune Encephalitis, their loved ones and caregivers. It is the only educational support group of its kind. Members receive one on one support, educational training in AE based on the research published in the field by top experts, advocacy in addressing their specific challenges or road blocks to reach the best treatment plan and outcome, emotional and personal support by members of our ‘AE Family’ who walk this walk.
Each Blog in the series will introduce you to one of our Admins and tell you a little bit about what they do in the group and what they do and are responsible for “behind the scenes”. Some of our Admins work full time and contribute 7 days a week while others donate their time and talents a few hours a day or as they can. The roles they hold are diverse from talking to each individual who asks to join the support group to answering posted questions, helping members understand or locate research on a specific topic, working with insurance coverage/financial discounted programs/denials of treatment to crisis management in varying situations. Some take on additional hats writing and editing blogs and THE HERD newsletter where we bring you up to date news. An Admin may assist members privately which can involve a team of Admin being assigned to a case that can at times run weeks or months until resolved. Each Admin brings their own talents and view points to the team. If you think you would like to become an admin e-mail firstname.lastname@example.org to request an application.
This month we are spotlighting Gene Desotell Co-founder and Treasurer.
My wife was diagnosed in 2009 with Autoimmune encephalitis. Before that we went from doctor to doctor looking for a diagnosis. I read a lot on the National Institutes for Health medical research. Before Facebook, there were yahoo groups. I would convey what I had learned from my reading to members there. As time went on, I watched as research began to unfold in this new neurological sub-specialty that was emerging: Autoimmune Neurology. I focused my reading on Communiques and Reviews written by key researchers in the field of Autoimmune Encephalitis tracking and absorbing new findings in each step of the evolution of discovery in the field with a key interest in the most accurate way to diagnosis and treatment Autoimmune Encephalitis.
Several years ago, Anji Hogan Fesler and I both had Facebook support sites where we each helped people with this disease. We had collaborated for years around our advocacy efforts which evolved into a strong working relationship where we were advancing each other’s efforts in our two forums. Anji’s forum was centered on Social Services support with emotional support and the sharing of experiences by people with the diagnosis or those where the diagnosis was being considered. She drew on her many years as a Social Worker in her advocacy. My Facebook forum was centered on what research was uncovering and how it was advancing the understanding of AE by conducting an educational group centered on what researchers recommended. To go back in time, less than 200 people had been diagnosed with anti-NMDAr (the most common antibody) at this time. 100 research papers were published that year which was more than the previous 10 years combined. Understanding was being advanced and very few doctors knew how to diagnose and treat so misdiagnosis and misinformation about AE was rampant. The understanding of autoimmune encephalitis was just emerging…. It was the beginning of patients not being automatically diagnosed with a psychiatric illness and committed. It was the beginning of an accurate medical neurological cause of the symptoms being identified. It was the Dawn of Autoimmune Encephalitis.
When we evaluated the landscape of what was available to patients and families affected by autoimmune encephalitis, we realized that while there were organizations who were increasing awareness and one with a focus on advancing research which assisted the public for the first time with some general and helpful information about AE. There were no resources that provided education and accurate answers to people who had this disease. Nothing available that supported patients and Families or provided advocacy in crisis or in the vast areas of need to people touched by AE. We focused on the question: How can one be their own advocate if they lack the basic knowledge of the disease and treatment and the support required to deal with the many challenges on their journey? The answer was: Education is Power. Lack of education about AE was interwoven in each element of struggle the AE community was having.
At this point in the evolution of what was to become International Autoimmune Encephalitis Society, Tabitha Orth had joined us as a patient advocate and was acting as a volunteer Administrator in both of our Facebook forums. By this time, the three of us had been called upon to help AE patients and families in a variety of crisis situations. Demand for services was growing exponentially and people in crisis were turning to us for help because there were no services available to them and there was a huge lack of understanding and recognition of AE in the medical community. We saw the additional need to get proper care in a world where most doctors have never heard of this disease. Assistance was needed to get patients to those locations where a good solid diagnosis could be established. Help in dealing with an insurance industry in the U.S.A., who also knew very little of the disease and would reject claims. The list of what was most crucially needed was directly associated with the lack of resources available to patients in the AE community and the key reasons patients and families were thrown into crisis and life threatening situations.
It became clear to all three of us that in order to serve the public and address this epidemic crisis we were baring witness to and knee deep in addressing daily, we should incorporate as a non-profit. Anji and I closed our Facebook sites and reopened under the new name of the non-profit in September of 2016. We have developed methods, tools and strategies to assist people in becoming strong advocates and self-advocates. By implementing fun visuals and memes that share pieces of information, a member can use these as cue cards or building blocks to build a strong and accurate understanding of the disease, treatments, diagnosis process and advance to an even deeper understanding of the process of the disease to become a vital member of their medical team and prevail with the best possible outcome. Video presentations on every aspect of the disease is on our website. Podcast interviews with key researchers are available so people don’t have to weigh through the difficult to read and understand research. We have focused on ‘user friendly’ methods addressing the need of educating members who have cognitive deficits due to the illness through only accurate current research. We continue to strive to expand that avenue in developing more services that can lead to what we wish for all members: Developing them to be a strong and educated advocate, providing access to skilled care with discounted travel and accommodations, getting claims processed and overturning insurance denials.
International Autoimmune Encephalitis Society continues to grow. The IAES Blogs began late 2017 and in 2018 we launched the organization’s bi-monthly publication THE HERD. The IAES website has been heralded by several of the top research experts in the field worldwide. Our public Facebook page reaches over 10,000 interested viewers a week on average. Medical students, Interns and Residence utilize the IAES website to further their studies, prepare presentations, and treat their patients. Established Neurologist have written us to let us know that the website has advanced their patient care. The IAES educational Facebook support forum is one of the critical services the organization provides. It allows us to provide a ‘classroom’ where accurate information can be shared, a place where one on one support and problem solving can occur, and a place where all of us can come together and not have to explain ourselves as we are among our ‘AE Family’ and people who walk to walk and understand in ways no one else possibly can. As members become stronger advocates, they help other members become stronger advocates. The difficult challenges around having AE are addressed daily and daily we are pleased to see members overcome road blocks that stood in their way. Whether that be over turning an insurance denial, getting to an expert via Angel flights, or simply helping each other through shared experiences and accurate information.
My role today is Administrative oversight. I take care of taxes for IAES, the incorporation up dates in the state of Delaware, contracting with companies who provide us support such as credit card processors and internet hosting, Oversight of building and updating our web site, Facebook site, as well as the day to day answers on the website through e-mail correspondence. All three Co-founders of IAES, Tabitha, Anji and I, have been involved from envisioning a dream, the setting up of the initial infrastructure and expansions. As Treasurer, I keep our operating expenses very low so as to maximize the help to the member and expand our growth.
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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.