With her background in public health, Lisa is a strong advocate. As is the case with many rare diseases, good advocacy is often the cornerstone of receiving an accurate diagnosis and access to proper treatment and rehabilitation. Here are some of the ways Lisa has been advocating for encephalitis awareness.
In 2019, Lisa worked with her filmmaker son to describe her experience becoming ill with autoimmune encephalitis. She describes the symptoms of her disease, including seizures, and how the disease affected her brain by causing memory issues, affecting her cognitive ability and affecting her motor abilities.
Lisa had the honor of interviewing Dr. Joe Lindley, Holistic Health Practioner, of Higher Health in Houston, Texas in February 2021. Lisa was very fortunate to become his patient in December 2017 when she was extremely ill with autoimmune encephalitis (AE). Under his care, she benefitted from a myriad of holistic treatments and approaches that helped restore balance and promote healing in her body. The wisdom and expertise of a holistic practitioner such as Dr. Lindley can be invaluable to healing from AE.
Lisa has been a support group leader with the AE Alliance since 2020. She co-leads an online monthly support group for survivors of AE, their caregivers and spouses. Anyone with a connection to AE is welcome to join a support group. The link below takes you to the AE Alliance website where you can find out more information about support group meetings.
In 2022, Lisa became part of the Living with AE Advisory Council for the AE alliance. She looks forward to continuing to collaborate with the alliance to raise awareness and share her insights, both as a survivor and as a public health professional.
On World Encephalitis Day, February 22, 2019, Lisa was interviewed live on the Morning Dose, a local tv news show in Houston, Texas. With the support and encouragement of the Encephalitis Society, she helped raise awareness by sharing a bit of her story and some facts about encephalitis. Her story is also featured on the Encephalitis Society website.
The AE Alliance’s annual Florence Forth run/walk is all about honoring our heroes, those who fought, and those that continue to fight AE. Lisa was honored as a hero in 2021. Click on this video to hear how well she continues to do and some of the approaches she used to help her body and brain heal. Since this video was made, Lisa has tested negative for the LGI1 antibody and no longer receives Rituximab or takes any other AE related medication.