Her Family Thought She Was Struggling with Mental Health. It Was Anti-NMDA Receptor Encephalitis.

As she stood in the garden, surrounded by friends and family, a splitting headache richocheted through Ciara Wilkie’s head. Her vision blurred. At first, Ciara didn’t think much of it. She hadn’t had enough water that day, she told herself. No big deal. A few days later, however, she became flushed with fear. She had been working at her job at Aldi when a customer went to pay her. But Ciara didn’t think the money was real. She found herself arguing with customers – but when they spoke back to her, she struggled to understand what they were saying. Ciara didn’t know it at the time, but these two episodes were caused by her underlying condition: anti-NMDA receptor encephalitis.

WalesOnline reports that Ciara’s condition continued to spiral downwards. In the home she shares with her boyfriend Joe, Ciara stayed up late. Her speech was abnormal, excitable, rambling; her notebooks were full of scribbled notes that nobody could figure out. When Ciara could fall asleep, she would wake up screaming. Joe contacted Ciara’s family. Everyone was concerned that she was dealing with some serious mental health struggles.

Then came the seizure. Ciara was admitted to the hospital where her health deteriorated further. Over the next few weeks, Ciara’s hallucinations worsened. She no longer recognized her parents, her sister, or her boyfriend. In fact, she would sometimes get aggressive with them if they came near her. She couldn’t sleep or talk. It took three weeks for doctors to finally diagnose her with anti-NMDA receptor encephalitis.

Ciara stayed in the hospital undergoing treatment, including fifteen plasma exchanges, for over two months before she was finally allowed to go home. Although she has somewhat recovered, she still struggles with everyday tasks. Her balance and mobility are poor, making it more difficult to travel, go to the store, or even drive her car. As she processes the events of the last year, Ciara also hopes to raise awareness and show others that they are not alone.

Understanding Anti-NMDA Receptor Encephalitis

Anti-NMDA receptor encephalitis is an autoimmune neurological disease. Normally, your immune system protects the body against germs, infections, or other illnesses by creating antibodies that target and attack the invader. In anti-NMDA receptor encephalitis, the immune system mistakenly generates antibodies that target proteins in the brain. NMDA receptors are located on neurons. These receptors help control movement, mood, and more. When these receptors are attacked, brain signaling is disrupted. This then causes the brain to swell.

Anti-NMDA receptor encephalitis most often affects younger individuals; the Encephalitis Society notes that 40% of cases occur in people younger than 18. It can occur in both males and females, but is more common in females. Some affected males might have testicular tumors, and affected females might have ovarian tumors, associated with this condition. Anti-NMDA receptor encephalitis can be life-threatening or fatal without intervention. With treatments like tumor removal, plasmapheresis, IVIG, steroids, CellCept, rituximab, and Cytoxan, recovery is possible. However, the recovery process is often slow and may last for months or even years.

Often, symptoms start mild before progressing to become severe. Symptoms may include:

  • Hallucinations or psychosis
  • Confusion
  • Seizures
  • Lethargy
  • Behavioral changes such as increased paranoia or aggression
  • Movemnt disorders including continuous writhing/twitching
  • Problems with speech and memory
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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