Autoimmune encephalitis survivor Bob Given shares his Thanksgiving story. This year Bob is especially thankful for the Florence Forth community and their support of the Autoimmune Encephalitis Alliance. Money raised from Florence Forth supported a clinical trial that provided cutting edge treatment for Bob. Read on to hear Bob’s story in his words.
On May 17, 2016 I had my first seizure. Every test to determine the cause was negative. After my third seizure, my primary care physician sent my blood sample and spinal fluids to the Mayo Clinic in Rochester, MN. On June 4, I was notified that the tests were positive for something called the CASPR2 antibody.
I had been diagnosed with autoimmune encephalitis (AE). I soon came to understand that AE is a rare but increasingly diagnosed disease in which my body was attacking healthy brain tissue. This was the cause of my seizures.
As part of my treatment options, Mayo Clinic advised me of the opportunity to enroll in a double-blind clinical trial testing a new drug protocol. After a week of testing at the Mayo Clinic to confirm my diagnosis and to ensure no other factors could result in the same diagnosis, I was enrolled in the study.
Thankful for the AE Alliance
After twelve months I am getting back to being myself and my treatments have ceased. In late 2016, I inquired to know more about the double blind study I was participating in and learned that the clinical trial was being funded in part by the Autoimmune Encephalitis Alliance.
The AE Alliance is supported by proceeds from the Florence Forth road race. In fact, the proceeds from the 2016 Florence Forth were used to support the clinical trial at Mayo Clinic. I came to realize that runners in Durham, NC were raising money for research into treatment for the disease that was about to strike me in California. I had to go see this event.
Attending Florence Forth
I was fortunate to attend the Florence Forth road race on March 4, 2017. While there I met other AE patients and shared meals together. I learned more about how the race raises money to support patients and their families in the battle against autoimmune encephalitis. The opportunity for fellowship with others who have experienced this horrible disease was uplifting in ways I could not have imagined. I plan to be at the race and events again in 2018, and beyond.
As I sit down with my family this Thanksgiving I am thankful for the Florence Forth community and the AE Alliance. Please join me in supporting this worthy effort by participating in the race, donating to AE Alliance or volunteering at Florence Forth.
On behalf of the other patients whom Florence Forth has aided, thank you!