What Can You Do When You Can’t Get Better?

By Sean Williams

It’s no secret that many young women and men experience painful emotional, behavioral and physical disorders at some point in their lives. For many, these disorders are a product of a life experience; perhaps a long-term relationship ended and spurred depression, or an injury altered an athlete’s future career.

For these people, the process of healing that follows a traumatic life experience is glibly referred to as taking time. Time, of course, seems to oversimplify the arduous process of coping with a disorder while personal development and adaptation enable change.

Nevertheless, it seems that people get better with time.

But, what do you do if you don’t get better with time? What if you can’t?

In a recent observational study published in the Journal of Neurology, Neuroscience and Psychiatry, researchers found that a cohort of patients with anti-NMDA receptor encephalitis suffered from persistent cognitive defects long after the disorder entered clinical remission.

Anti-NMDA receptor encephalitis is an autoimmune disorder that mainly affects young women. Encephalitis, a medical term that refers to acute inflammations in the brain, can result in severe medical problems such as seizures, dementia and memory-loss.

NMDA, also known as N-Methyl-D-Aspartic Acid, is a tiny chemical in your brain that “plays a major role in learning and memory.” When anti-NMDA receptor antibodies block the NMDA receptors, it can cause lasting effects that often result in impairments in executive function and memory. For a first hand account of the effects of anti-NMDA receptor encephalitis, read Susannah Cahalan’s Brain on Fire.

In her book, Brain on Fire, Cahalan writes: “All the people I spoke to had lost themselves. And not everyone had found herself again. Some would never be as smart or funny or animated as before the illness.”

And even if they are perceived to be normal, it is important to note the insidious nature of this disease, and that appearances are often deceiving. Cahalan writes, “Patients feel that they have more difficulty doing the things that had once come organically, leaving them essentially still far away from the person they were before the disease.”

Fortunately, patients diagnosed with anti-NMDA encephalitis are not without hope. An international team of researchers from several institutions in the United States and Germany is working to understand the role of immunotherapy in preventing the disease’s legacy.

According to the study, 8 out of 9 patients in remission from the disease suffered from “profound neuropsychiatric deficits” such as psychosis, behavioral change, amnesia and dysexecutive syndrome. These persistent cognitive defects affect attention, working memory, episodic memory and the brain’s control over the body.

There is significant correlation between prompt, aggressive autoimmune therapy and improved cognitive outcomes after the disease enters remission. However, researchers concluded that there is a sincere need for a study on a larger cohort of patients in order to more accurately understand the effects of early onset treatment.

The disease’s rarity limits the study’s sample size, meaning that this study is not as robust as scientific studies of other autoimmune disorders such as AIDS. Due to a lack of control data, researchers compared their patients’ results from a battery of cognitive assessment to normative data in order to understand the role of immunosuppressive treatment on the outcome of the disease.

For some, time does not heal all wounds. Fortunately, even if you cannot heal, you may help others.

 

References:

Finke, C., Kopp, U. A., Prüss, H., Dalmau, J., Wandinger, K. P., & Ploner, C. J. (2011). Cognitive deficits following anti-NMDA receptor encephalitis. Journal of Neurology, Neurosurgery & Psychiatry, jnnp-2011.

 

Update 9/18/2015 – Edited by Paige Jarreau

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