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Living With Anti-NMDA Encephalitis

Anti-NMDA encephalitis is a complex autoimmune disorder that can bring waves of neurological problems, causing significant challenges for both sufferers and their loved ones. This condition arises when antibodies mistakenly attack the NMDA (N-Methyl-D-Aspartate) receptors, vital components of the central nervous system responsible for neurological transmissions, learning, and memory formation.


With adequate and prompt treatment with immunotherapy (typically corticosteroids, intravenous immunoglobulin (IVIG) or plasma exchange, removal of any identified teratomas immunosuppressive drugs, full recovery can be achieved.

 

Deborah's story


Twelve years ago, when Deborah was confronted with Anti-NMDA encephalitis, there were limited information and diagnostic tools for this debilitating disease.


Deborah had to undergo a unique process where her spinal fluid was sent to Oxford University in the UK to confirm her diagnosis. This was due to the lack of understanding surrounding this condition then. Nevertheless, advancements have been made since then, aiding in the early detection and diagnosis of Anti-NMDA encephalitis.


Deborah (far left) and her family

Deborah's treatment journey included a combination of therapies aimed at suppressing the autoimmune response and managing the symptoms associated with Anti-NMDA encephalitis. She underwent a five-day course of intravenous immunoglobulin (IVIG) to modulate her immune system. She has documented her story on her blog.


Additionally, anti-seizure medications such as Epilim Chrono, Keppra, and Phenytoin were administered to control seizures, while steroids and Azathioprine, an immunosuppressant, were used for an extended period of two and a half years.


Deborah does not require any medications, which is a testament to the effectiveness of the therapies she received. However, she remains cautious and undergoes regular CT scans of the pelvis every three years. This is because Anti-NMDA encephalitis has been closely associated with the presence of ovarian teratomas, necessitating ongoing monitoring.


Deborah still experiences some lingering effects like headaches when exposed to flashing lights and occasionally struggles with expressing herself.


Despite these challenges, Deborah has found happiness and purpose in her life. She holds a fulfilling job at The Rice Company Ltd and recently tied the knot with her partner. Additionally, she indulges in her passion for baking, fulfilling orders through her Instagram account.


Deborah's journey with Anti-NMDA encephalitis sheds light on the challenges faced by patients in the past due to limited diagnostic tools and information. However, with advancements in research and treatment options, individuals affected by Anti-NMDA encephalitis have greater hope for recovery.


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