Under Attack: One Woman's Terrifying Battle With an Auto-Immune Disease
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Q: He concluded that you had anti-NMDA receptor encephalitis, a disease in which the immune system attacks proteins called NMDA receptors that lie on the surface of neurons. What do those receptors do?
A: NMDA receptors are concentrated in the areas that control learning and memory, higher functions like multitasking, and some of the more subtle aspects of personality. When the immune system makes antibodies that attack these receptors, people may have seizures and violent fits. They might act psychotic and paranoid, like I did, or become hypersexual and lewd. How you respond depends on the area of the brain that's most affected and the number of receptors damaged.
Q: After you were treated and the renegade antibodies were flushed from your system, your recovery took months. Did you ever worry that you might never fully recover?
A: Definitely. At first I could barely walk. I'm a fast talker, but my speech was really slow for almost a year. And I was lucky. I was only the 217th person in the world to be treated for the disease, but many people who get it never recover—and about 13 percent of adults who do recover eventually relapse. So now if I'm sitting in the subway and the lights seem brighter, I'll think, "Am I seeing things?" Or if I'm feeling moody, I'll worry, "Could I be losing my mind again?"
Q: As often happens with a rare illness, it took time to get the right diagnosis. Do you have any advice for people in a similar situation?
A: Get a second opinion. The first neurologist I saw just thought I was partying too much, and he stuck by that claim even after my family insisted that he was wrong.
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A: NMDA receptors are concentrated in the areas that control learning and memory, higher functions like multitasking, and some of the more subtle aspects of personality. When the immune system makes antibodies that attack these receptors, people may have seizures and violent fits. They might act psychotic and paranoid, like I did, or become hypersexual and lewd. How you respond depends on the area of the brain that's most affected and the number of receptors damaged.
Q: After you were treated and the renegade antibodies were flushed from your system, your recovery took months. Did you ever worry that you might never fully recover?
A: Definitely. At first I could barely walk. I'm a fast talker, but my speech was really slow for almost a year. And I was lucky. I was only the 217th person in the world to be treated for the disease, but many people who get it never recover—and about 13 percent of adults who do recover eventually relapse. So now if I'm sitting in the subway and the lights seem brighter, I'll think, "Am I seeing things?" Or if I'm feeling moody, I'll worry, "Could I be losing my mind again?"
Q: As often happens with a rare illness, it took time to get the right diagnosis. Do you have any advice for people in a similar situation?
A: Get a second opinion. The first neurologist I saw just thought I was partying too much, and he stuck by that claim even after my family insisted that he was wrong.
More About Taking Care of Yourself
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