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November 6, 2018 | Jo-Anne Villar

 

Jo-Anne Villar with her daughter Jordan

Each month the IAES Blog is 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 admin@autoimmuneencephalitis.net to request an application.

This month we are spotlighting Jo-Anne Villar


I am a mom of a now 15 year old daughter Jordan, who has been battling Autoimmune Encephalitis for at least 3 years. I think I’m like most moms of children with AE, we joined IAES group, to be able to learn, share, and connect with others. We want to feel that we are not alone. I joined IAES around 2015 in my frantic search to figure out for myself what was happening to my daughter.

I now volunteer for IAES helping guide and comfort members that are dealing with AE themselves or caring for someone who is. I share research pertaining to their circumstance, or my experience from my daughter’s journey, or comfort and try to help them find strength.

 

I am a mom to 5 kids that my husband and I are raising. We have a full house with his two sons (11 and 17), my son (16)and daughter (15) and our 8 year old daughter. I’m a wife to a dedicated husband for over a year now, but we have lived as a family for 11 years. We have a very busy household like most with 7 members. We all help care for each other, especially caring for Jordan. To my amazement, we developed a protocol when she has an emergency. I realized one day that they all know what to do in an emergency. When a seizure occurs one will alert, another turn her to her side and keep her safe, another will get her medicine bag, another will time, another will have a phone ready to call 911. Even my 8 year old has been helping since she was six. I am Business Office Manager and Insurance Biller for a skilled nursing and rehab facility. I am determined that every patient should understand their condition, their treatment, and their insurance coverage. I advice patients of the services they are getting in the nursing home and explain the extent of their coverage and their financial responsibility. I also communicate with patient insurance companies to make sure that the covered services we provide are authorized and paid for. I care that our patients get the services they need. I care that our patients know what their insurance will cover. I care that the insurance will pay for what they authorize.

I have been a patient advocate for over 20 years. It has definitely helped me advocate for my daughter and my family. My profession has given me the strength and experience to be a case manager for my family. I was a case manager and caregiver for my mother in law when she battled breast cancer. I was a case manager and caregiver for my mother when she battled leiomyosarcoma. Now, I am my daughter’s caregiver and case manager. I truly believe that our experiences lead us to become who we are meant to be.

 Jordan feeling at her better 6 weeks after Rituxan treatment.  She did have a seizure 2 days before this picture was taken, but then was seizure free for 3 months.  Jordan has been battling her AE for 3 years. 


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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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352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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