August 16, 2018 | Tabitha Andrews Orth
Tabitha Orth, Co-Founder and IAES Secretary Board of Directors
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 viewpoints 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 Tabitha Andrews Orth, Co-Founder and Secretary on the IAES Board of Directors.
I am grateful for the opportunity to share with all of you. I may have worked with some of you in the past and while others may not know me personally, I consider you all part of my “AE Family”. My passion for raising awareness of autoimmune encephalitis and working as a patient advocate was born out of my experience as an AE patient. I never wanted anyone to go through what I did myself. So, when I was well enough to begin to help others who were looking for answers, I did what I could by sharing what I had learned.
No one can quite fully grasp exactly what an AE patient has been through or is going through as another AE patient can. We don’t have to explain anything to each other, we understand. It is for this reason that we are ‘family’. We are joined by the shared experience of battling a rare disease that is also young enough that many neurologists have never seen a case or read about these disorders. That places us all in a unique situation and binds us together on a deeply personal level. When I was searching for help and answers in 2013, I met two advocates, Anji Hogen Festler and Gene Desotell, who I would later work with first as a fellow administrator in the support forums they had established for AE patients and later as one of the co-founders of IAES. Anji said something to me then that impacted me greatly and helped me realize that I was no longer ‘alone’ in my battle. She said: “Welcome to the family you never knew you had.” Those words were like someone throwing me a life preserver as I bobbed around in a tumultuous sea. It was due to their help and members of my AE Family that I was directed to a doctor who accurately diagnosed me after 14 months of unclear and multiple misdiagnoses. It is because of my AE Family and my husband, Jim, that I am in recovery and thriving in my daily life today. I share this as it goes to where I get my passion. You are Me and I am You. It’s that simple and binding.
Pieces of my story can be read about in two past blogs, in the July 4th blog,
Autoimmune Encephalitis- We shall overcome
and the March 29, 2018 blog:
Today, I have been asked to share what I do for IAES in the two roles that I hold. First as a Co-founder and Secretary on the Board of Directors and secondly as an Administrator in the IAES educational support group for AE patients. The demand for the services IAES provides has sky rocketed and continues to grow mainly for these very hopeful reasons: people are getting diagnosed more quickly and awareness of autoimmune encephalitis has increased substantially due to the efforts of IAES and everyone in the greater AE community.
In my role as Co-founder and Secretary, I routinely correspond with neuroimmunologists who lead in the research in the field of autoimmune neurology. Yes, due to the discovery of autoimmune encephalitis in 2007, an entire specialty in neurology has been born and we are welcoming doctors every year into the AE community who have chosen to focus on these disorders. Several times a week I am corresponding with doctors on a variety of topics. It could be that they are writing to offer their personal involvement with IAES in support of raising awareness or generously offering their time as a contact we can reach out to for questions, verification in understanding research, or a desire to be placed on our Doctor’s list. I may reach out to secure an appointment for a patient in urgent need or to collaborate on a project. Researchers also send us their recent published work as well. We are very grateful for the assistance these experts extend to us daily and for their quick responses to queries.
People from all over the world both medical professionals, loved ones of a sick family member and patients with or without a diagnosis of AE contact us through our website, e-mail us directly or reach out to us via the IAES public Facebook page or Twitter. IAES receives daily enquiries and calls for help through all four of these avenues. It is my job to answer these enquires in a timely manner. Due to the different time zones, I check for incoming correspondence several times a day to ensure a reasonable response time. The two most common types of contacts we receive through these avenues are fearful cries for help. Commonly the writer is amidst a life-threatening crisis and needs immediate direction as to the best way forward for their loved one who is hospitalized or has been placed on a psychiatric hold. These situations are multifaceted. The second most common inquiry from a patient, and this example is specific to patients in the U.S.A., has to do with medical insurance denying a life-saving treatment or around the topic of medical insurance. Almost everyone is surprised to hear that they may qualify for discounted medical rates or owe nothing to a hospital due to their income under the ACA. Correspondence with these cases are on-going until the person is out of danger and has received the help they need, or the case is resolved. Again, this can be working with the individual for days, weeks and sometimes months and at times demands other staff member involvement. Due to the crisis nature of these inquiries, timely responses are critical.
The other evening a person contacted us through out public Facebook page in crisis. She had been sick for two months and her neurologist didn’t know what was causing her problems. He had called her about 9pm that night and told her to report to the ER because he wanted her to have a lumbar puncture. She was terrified that she would be viewed as a psych patient and put on a psychiatric hold. She was refusing to go due to this fear and instead reached out to IAES. I was able to explain the importance of her going to the ER immediately and made sure the neurologist called ahead to let them know his patient would be arriving for an urgent lumbar puncture. I gave contact information to a local expert so her neurologist or the ER could reach out to them if needed. She continued to update me throughout the night and was medically air transported, (medevac’d), to the expert I had recommended six hours after she contacted us.
As one of the administrators in IAES’ educational support group my main job is to work with the other administrators behind the scenes to help mentor them in their understanding of autoimmune encephalitis and how-to best answer questions and find the accurate answers to questions. I also answer questions posed in the group. All administrators stay in contact in a designated private message group, so we can discuss questions, concerns and problem solve together as a team. Decisions are made by the team as the best way to handle challenges as they occur. We let each other know when we will be unavailable, so others can watch the group to make sure questions are answered timely. Several of us are in different time zones which enables us to cover the greater part of a 24-hour period.
Members of the support group will private message me when they are dealing with a personal challenge that they are not comfortable talking about in the group. We routinely work on crisis cases one-on-one which usually involves several administrators/patient advocates who have expertise in the area of concerns for that particular case. Members will also private message with a quick question but will always receive a faster answer if they pose the question in the support group as we must prioritize private messages in the order received. This is a wonderful opportunity for me to remind members that if you have an urgent need to type ‘urgent’ as the first word in a private message for a more timely response?
As my day proceeds, I am updated by the goings on in all areas of the organization and participate in those meetings. Two areas I particularly enjoy, because I find them relaxing, are putting THE HERD newsletter together and creating informational memes. Yes, I am the creator of all those memes you see and full disclosure I began to make them for myself as a way to learn about autoimmune encephalitis and support my own memory deficits. I rely on the IAES memes as much as all of you do to refresh my memory and answer your questions.
I am truly honored to work with such talented and passionate volunteers. It is extremely rewarding to be a part of an organization that serves the AE community in areas where the need is so great. I witness lives being saved and improved daily due to the work of IAES and am proud to be a part of it. If you would like to volunteer your time or talent and join our volunteer herd, please don’t hesitate to reach out. You know where to find us. We are just a click away.
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.