by Jackie M. Stebbins, Esq.

It seems incomprehensible that a person could start the day with a 10 million dollar professional career before her, but she will erase it by the end of the day. It’s scary to think you could be diagnosed with a life-changing disease you’ve never even heard of. It is heartbreaking to learn that your own immune system can attack your brain until you are incapacitated and unable to participate in your own life as a 34 year old lawyer, wife and mother of two.

In my case, it is not hypothetical. I am a survivor of Autoimmune Encephalitis (AE) and this happened to me in May 2018.

Within days, I was taken from the only world I had ever known and thrust into the throes of a devastating and little-known neurological disease with complications and chronic health conditions that would follow me for the rest of my life.

Adding further insult to injury was that I was in a state of cognitive impairment while trying to make sense of my diagnosis and was completely unfamiliar with it. I had never heard of AE. (It took me years to discover that my lack of awareness was not new. According to Encephalitis International, nearly eight out of 10 people in the world have never heard of encephalitis.)

And in what I found to be amazingly punishing, at the time of my diagnosis, I didn’t know anyone else who had AE. In my early days, all I had was a limited knowledge of Susannah Cahalan and her best-selling book about her journey with AE, Brain on fire. But I didn’t know the famous author, and I didn’t think she could know me. (I also refused to read his book, because it seemed too close to me, and I hoped to one day write my own story. I didn’t read it until years later, when my book, involuntary, has gone to publication.)

Simply put, encephalitis is an inflammation of the brain. But what’s harder to express is how it shattered my life and career. It broke my brain and my heart and I felt like I had nowhere to turn. The brutal assault of my disease on my brain was bad enough, but the absence of a nearby community of others to empathize with was devastating. And unfortunately for me, it took me a while to find my people, which only added to my struggles.

After almost a year of isolation and feelings of hopelessness and loss, I discovered the global leader in encephalitis, Encephalitis International. Once connected, I started attending their online conferences and virtual meetings with other survivors. Finding my home in an organization that focused not only on research and medicine, but also on supporting patients and education it changed life. Through their programming I came to the powerful realization that I was not alone in my pain and uncertainty and that others were there to help. I couldn’t wait for the day when I could attend an in-person patient event.

It took me a while to get to the first live event (ugh, COVID), but the payoff was great. On September 22, 2023, I attended Encephalitis International’s “My Brain and Medicine” event at the University of California, San Francisco. Nearly 100 doctors, scientists, patients, caregivers, family and friends came together in the name of encephalitis. I learned from experts, met new faces, shared stories, hugged and held hands through tears and smiles. And I can’t stress this enough: for the first time in my life, every person around me knew about encephalitis! Many of us had come a long way since the days of uncertainty. We felt embraced and a strong sense of belonging – so much so that we took a big group photo to commemorate the day.

UCSF Encephalitis Group

Source: Jackie M. Stebbins

Encephalitis does its best to rob us of our personal connection, so we must work diligently to overcome its damaging effects. That’s why I believe that patient events are crucial pieces of our medical puzzles.

But it’s not just “encephalitis people” who will benefit from patient events; patient gatherings also help those suffering from other illnesses, including neurological conditions, cancer, autoimmune disorders and more.

A simple PubMed search shows that gathering with similarly situated patients is useful for (1) emotional and psychological support, (2) reducing anxiety and depression and learning coping mechanisms, (3) social connectedness and cognition, (4) symptom management and treatment, (5) patient empowerment, and (6) caretaker support.

In my case, not only did I not know any other AE patients or survivors at my diagnosis, but I also live in Bismarck, North Dakota, where the closest metropolitan areas are states away. Fortunately, Encephalitis International holds many patient events throughout the year, giving everyone the opportunity to connect and share both in person and virtually.

In July 2024, I was invited to speak with the organization’s CEO, Dr. Ava Easton, about the power of patient events at a “My Brain and Medicine” conference in Cleveland. However, due to global airline IT outage, we were unable to fly out of North Dakota. But with the help of technology and helpful hands willing to pivot, I addressed the audience from my home office. It was great to share in the success of the event even though I was several states away.

Based on my personal experiences, it is my humble opinion that patient events are vital for encephalitis patients, as the lack of awareness of the disease and the complexity of its diagnosis, treatment and recovery means that our group is not one to receive many. of the mainstream Carefulwhich makes us feel forgotten.

Besides, our disease is invisible. Our brains are sick, but it may not be obvious to others. Most of us have residual medical effects and other complications from a life turned upside down. Many individuals diagnosed with encephalitis do not receive a proportionate referral to a local support group or peer-to-peer services. Thus, we feel that we carry the scars of our journeys alone, and this burden is overwhelming.

Although significant scientific and medical advances have advanced our understanding of encephalitis, and while Brain on fire has achieved global recognition, there is still much work to be done in terms of rapid and accurate diagnosis, standardized treatment, recovery rates and, hopefully, one day, a cure.

Specialist clinics and hospitals, various therapies and counseling are vital for those affected by encephalitis and others facing serious medical diagnoses. But the need to bridge the gap between science, medicine and people is also central to those seeking holistic healing and empowerment. And the only way to fill that void is through patient events.

I’m like that grateful for Encephalitis International’s commitment to its cause and service to all. I hope that other advocacy and research organizations for countless diseases will follow Encephalitis International’s lead and recognize the crucial role that patient events can play.