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January 17, 2019 | Mari Wagner Davis, RN, Nicole Bernard Vold

 

Mari Davis, RN

Hello, my name is Mari Davis. I am a 55-year-old with 30 years of nursing experience.  I had never heard of Autoimmune Encephalitis until I was diagnosed 2 years ago after having seizures at work. Since then it has been a journey of rehab, seizures, treatments and medications.

The treatments I have undergone for my autoimmune encephalitis have been plasmapheresis, steroids and IVIG.  I had a 3-week inpatient rehab stay until I was able to walk without a walker, I then went to a day rehab program that included Physical Therapy, Speech therapy for cognitive issues and vocational counseling. After that I did a cognitive medicine rehab computer program which was terribly boring. Now I do luminosity every day.  I am currently on 3 seizure medications to control my seizures. 

I got a second opinion at Northwestern Medicine in Chicago with a doctor listed on the IAES Doctor’s list on their website.   She did not recommend any additional treatment as of now. I have good control of my seizures and I had to take a driver’s test again before I could drive.

Prior to coming down with autoimmune encephalitis, I worked as a Nurse Case Manager.  I utilize my knowledge of resources and experience with the medical system in my volunteer role with IAES.  It is my hope that my contribution will be helpful to others as we move ahead in this journey together. I have found International Autoimmune Encephalitis Society’s website to be very helpful to me personally and the educational support group invaluable.  I look forward to assisting others as they move ahead on their own journey with AE and contributing my skills and knowledge to IAES by expanding the resource section on the website in 2019.

I enjoy talking with and assisting IAES members and I also do volunteer work at a local hospital training volunteers who work on the floors.  I try to clean, cook – do something normal each day. My biggest adjustment has been not working and dealing with my feelings around that. My biggest frustration has been the loss of memories from 2-3 years before I got sick along with a sketchy memory the last 2 years.  Ask me about something that happened 20 years ago and I’m fine.  I am grateful for the opportunity to share my education and experience as it allows me to be able to feel a personal sense of satisfaction that I can still make a valuable contribute despite AE and how it has changed my life.


Nicole Bernard Volc

Nicole is a Health Sciences educator and has autoimmune encephalitis. She holds an undergraduate degree in Genetics, a Master of Medical Science and a Master of Education and has been teaching for 16 years.

My name is Nicole and I have been diagnosed with Hashimoto encephalopathy since 2005. I have received numerous types of treatments but IVIg seems to be the one that stabilizes me best. Even then, its a seven-week cycle of returning symptoms. In my professional life I taught human anatomy and physiology at a major Canadian university. I am now on long term disability and focusing on my family. I have five kids, two biological who were born after diagnosis. I enjoy the IAES website and have found it a treasure trove of information and support. I assist others on their journey with this disease through my experience as a patient and educational background.


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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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