Barbara Vujaklija, RN

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 Barbara Vujaklija.

When you ask to join the IAES educational support group, I am often the first person a prospective member meets as I screen the requests to join the group.

I am a retired Registered Nurse (RN) who has worked in a variety of settings in healthcare. I actually started off as a Hospice/Home care Aide working with nursing staff in patients homes. I then went into a long term care facility as a State Tested Nursing Assistant (STNA). Both positions gave me hands on experience with dementia of all kinds and prepared me for my career as a nurse. I then worked for several years as a Licensed Practical Nurse (LPN) In long term care doing infection control and rehabilitation nursing. I decided to finish my degree and become an RN and graduated in 2004 and started work straight away at the local County Health Department. There as with every other nurse in the building I wore numerous hats but specialized in Infectious Diseases and Family Planning/STDs. I took an 18 month break when AE first hit and then went back to home care, this time as a nurse, until I was forced to retire altogether due to AE.

Having to quit working at a job I loved was devastating and frankly falling in with IAES saved my sanity and self esteem. Being able to help people again and learning from everyone was like nursing again.

My two main jobs with the group are New Requests Screener and Blog team scheduler. So often I am the first person you have contact with when you apply to join. I am the one who asks all those pesky questions about tests and treatments and doctors! So why do I ask those pesky questions? Most importantly we are a disease specific group. The information and research that we have to share pertains to autoimmune encephalitis and could be harmful if applied to another disease, so we want to make sure that the diagnosis is correct.

We ask about doctors for two reasons: first we want to make sure that you are with someone who understands AE and can get you first line treatment

fast. Second if you have an expert doctor who has published on AE we can add them to our list of experts so everyone can access them.

We ask about tests to make sure that the standard tests have been done to confirm a diagnosis. The same with treatment, we want to make sure that your doctor understands the treatment protocol so that you get the right medications fast as that is the key to successful first stage recovery.

If a person meets all the criteria and has a doctor diagnose them with AE then we approve their membership and proceed to a welcome post. This introduces the new member to the group and the membership to the new member. Some general information is given at this point and then the wonderful members take over.

If the criteria are not met all attempts are made to direct the requester to the right doctors and support groups that are appropriate. Sometimes we decline right away and other times it is a question of waiting a few days for test results, in which case we don’t decline right away but stay in contact with the person until the test results confirm or not the diagnosis of AE.

Many times these decisions are judgment calls based on our knowledge of the diagnosis and treatment of AE and may seem arbitrary. But with all of the up to date research at our finger tips we can usually get it right. Once declined a person may reapply if their situation changes and the process starts again.

As Blog team scheduler it is my job to make sure that we have the right number of blogs, also a varied assortment, for each month. We try to bring you members stories along with informative blogs. Some of the blogs my team and myself write for ourselves or members who have a story to tell but need a ghost writer. Sometimes we do interviews of members. We are moving into video blogging, slowly but surely. As scheduler I also assist in inviting members to blog and then helping them to get the project done.

Occasionally I will answer a question in a post but as we have other volunteers who do this I tend to stay out of it unless it pertains to something to do with nursing.

Well that’s me next month we will have another volunteer explain their behind-the-scenes work.

It is never to late to volunteer for any job. A few hours a day or week make a huge difference. And it’s fun!