AE survivors and family members had a unique opportunity to ask questions of two physicians in the field during Florence Forth weekend. Anusha Yeshokumar and Eliza Gordon-Lipkin were generous with their time and joined us by video conference. Their current interests are in many aspects of the disease, but a primary focus is long-term outcomes for patients. One study has shown that many patients are struggling with memory, attention, fatigue and other challenges several years after having AE. Their clinical experience has supported this idea.
See below a sampling of interesting answers to questions asked by patients and family members:
- Additional biomarkers are being sought for diagnosis as MRIs and CSF can be normal.
- Targeted therapies are being researched for specific receptors, such as NMDA.
- It is not known if damage occurs in the brain due to repeated relapses, which some patients experience.
- There needs to be greater interdisciplinary education for medical professionals and communication between departments within the hospitals.
- Patients should be followed for several years after diagnosis as it is not known yet whether AE puts a person at higher risk for other autoimmune diseases.
- Clinical trials will be underway soon. As AE is a rare disease, these will be multi-center studies. Acquiring enough patients for these studies will be a challenge but the AE Alliance and patients can best support these efforts by getting involved.
Thanks to Dr. Yeshokumar and Dr. Gordon-Lipkin for joining us to share their research and answer questions. We all learned a lot from one another! Thank you also to the families who traveled from near and far to join us during Florence Forth Weekend!