As an advocate, patient, and member of the autoimmune community, Reggie Barnes, Director of Patient Partnerships at Autoimmune Registry, has shared his story on the challenges he encountered before—and after—his diagnosis of autoimmune encephalitis.
"I was living a normal, everyday life until my body started attacking itself in 2000. It took 15 years before my condition was finally diagnosed. My journey was plagued by misdiagnoses, missteps, and heartaches.”
Reggie was eventually diagnosed with GAD65 autoimmune encephalitis, in which the antibody glutamic-acid-decarboxylase 65, destroys an enzyme necessary for the production of the neurotransmitter GABA (Gamma-Aminobutyric Acid). GABA reduces neuronal excitability throughout the central nervous system, and without it, the brain and nervous system cannot work properly. “It seems like every month there is some new symptom. If I didn't have a medical team that believed in testing and research, they would not have found the root cause of the many symptoms that affect my life."
Here at the Autoimmune Registry, we hope to amplify the voices of those who have and continue to struggle with autoimmune diseases. To help us accomplish our goals, please consider leaving a donation for Giving Tuesday on November 28th. We appreciate any contribution!
With Reggie's hard work, the Autoimmune Registry is proud to announce that we have recently partnered with Encephalitis411, a nonprofit that serves as a link between patients, caregivers, clinicians, scientists, and other related stakeholders facing encephalitis. Their 3-pronged approach supports research, builds awareness, and advocates for patients to improve the quality of life for those affected by encephalitis.
Please support the Autoimmune Registry by joining our registry or sharing it with a friend who has an autoimmune condition.
