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June 7, 2018 | Trystn K. Daley RN, BSN

Recently, I completed a Population Health practicum for my graduate nursing program. As part of the course, I spent 105 clinical hours at a local hospital of which I chose to work with patients diagnosed with autoimmune encephalitis as my population of focus. The aim of the clinical was to look at the health needs of the population and using evidence-based research and collaborative effort with the health care team, design intervention that supports the overall health of the population. I focused on examining diagnostic processes when patients present with initial symptoms.

My career as a clinical RN has mostly consisted of inpatient neuroscience nursing and I chose to work with the AE population due to my special interest in improving outcomes for patients suffering from AE. As I went about the course, I quickly learned that International Autoimmune Encephalitis Society proved to be an excellent resource to myself as a health care clinician and overall a dedicated group of people who work tirelessly to improve the health and lives of patients diagnosed with AE and their families from all over the world.  

My goal was to retrospectively look at what diagnostic tests were being done on patients diagnosed at the clinical site I was working with and to see how those findings lined up to the Lancet Neurology position paper titled, A Clinical Approach to Diagnosis of Autoimmune Encephalitis, written by Dr. Josep Dalmau and his colleagues. This paper guides clinicians to arrive at a diagnosis prior to the antibody status result which can take some time as it is most often sent out of facility and additionally having no antibody present does not eliminate a diagnosis of AE as not all antibodies causing AE are yet known. Evidence strongly suggests that earlier identification and initiation of treatment lead to a better prognosis for the patient thus standardizing diagnostic approach is an important intervention to support improved patient outcomes. Additionally, symptoms of AE mimic other disorders so that is another challenge to arriving at diagnosis that I identified in my research that can affect timeliness of treatment.

Early in my research, while doing an online search for existing community resources for Autoimmune Encephalitis patients, I found and reached out to International Autoimmune Encephalitis Society and was quickly contacted by an administrative team member. The admin team helped answer many of my questions about the issues patients face with being appropriately diagnosed initially as well as the long-term health difficulties that the population experiences. I found the admin team to be very knowledgeable in pointing me in the direction of evidence-based research articles and additionally they were willing to share their own personal experiences in facing an AE diagnosis. That information was most valuable to me as my sole purpose of working towards being a nurse leader is to help people by improving the quality of the care that they receive and to promote better health outcomes.

I was most impressed as I observed the International Autoimmune Encephalitis team working together behind the scenes to address individual needs each day and most days late into the night and in their commitment to providing a supportive place for those newly diagnosed to turn where there is a group of people who truly care and who also deeply understand.

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.  

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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.

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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