Patient advocacy is often the cornerstone of receiving an accurate diagnosis and access to proper treatment and rehabilitation.
In 2019, I worked with my son to make this video to raise awareness and share my experience becoming ill with autoimmune encephalitis. Watch it to learn about my symptoms of LGI1 AE, including seizures, and how the disease affected my brain by causing memory issues, and affecting my motor abilities.
For many years, the AE Alliance’s Florence Forth run/walk was held to honor AE heroes - those who fought, and those that continue to fight AE. In 2021, I was honored as a hero and this video was made to help promote the event.
In this hopeful message, recovery progress is shared including various approaches used to help my body and brain heal.
In 2022, a year after this video, I tested negative for the LGI1 antibody and no longer receive Rituximab or take any other AE related medication.
In 2025, the AE Alliance asked me to be part of the AE Stronger Together Storytelling Library. In this short video I share some insight about the steps I took to recover from LGI1 AE and give an update on how I am doing now.
Follow this link to hear more inspirational stories about living with AE, being an advocate, and the challenges of being a caregiver.
In 2024, Mridula Bharathi, host of the Neurological Disorder Podcast and current Yale University student, changemaker, and advocate for neurological disorders, invited me to be a guest on her podcast. In this episode we talk about my diagnostic journey, seizures, and the lifestyle changes I implemented to help recover from encephalitis.
On World Encephalitis Day, February 22, 2019, I was interviewed live on the Morning Dose, a local tv news show in Houston, Texas. With the support and encouragement of the Encephalitis Society, the intention was to raise awareness by sharing a bit of my story and some facts about encephalitis. My story is also featured on the Encephalitis Society website.
Since 2020 I have been a co-lead for an online support group hosted by the AE Alliance. There are now numerous support groups to chose from, offered different days and times.
Community support groups are open to anyone with a connection to AE.
There are also audience specific support groups. There is a group specifically for Caregivers only. Another group is for Partners to attend together. A group called Individuals with AE is very social. There is also a group called Beginning Again for younger survivors.
Whatever you choose to attend, you will find a warm, supportive environment. Click the link below for more information, schedules and how to sign up.
More support and resources can be found at Encephalitis International. Over the years, I have called the helpline and spoken to a person on the support team and I have attended online support groups.
A wealth of information is available on their website.