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Wednesday, March 9, 2011

Myths about locked-in syndrome

Here’s a cheerful, if unanticipated bit of news: most patients suffering from locked-in syndrome (LIS) feel that they lead happy lives. Steven Laureys and his colleagues from the University Hospital of Li├Ęge, Vrije Universiteit Brussel and the French Association for LIS surveyed a group of LIS patients and got some surprising results.

LIS occurs when a person is completely paralyzed by a brain stem injury. The person is completely conscious and aware of his surroundings, but unable to move or communicate other than by eye movements (in extreme cases, the person cannot blink, but those patients were not part of this study). One might think such patients would feel that their lives were bleak and hopeless, and even that they might prefer euthanasia. One would be wrong.

It turns out that in a group of 91 LIS patients who completed the survey, 72% said they were happy. Only 7% said they would opt for euthanasia if they could. Of the people who were unhappy, many had sustained their brain injury relatively recently. The data suggest that patients require a long adjustment period and may be encouraged to know that in time they will probably feel better about themselves and about their lives.

One major caveat to this study is the fact that there were only 91 completed surveys out of an initial cohort of 168 LIS patients. If every one of the remaining 77 people were too miserable to respond to a survey, that drops the happy group down to just under 40%. But hey, I’ll take it! If that many people can be happy while living with LIS, I think it says some very positive things about human nature.

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