One famous Urbach-Wieth patient, known as SM, has been the subject of scientific studies at the University of Iowa in the US since the mid 1980s. In the early 2000s, Justin Feinstein was a graduate student when he joined the team, and began looking for ways to frighten SM.
“We showed her every single horror movie we could find,” says Feinstein ….
Urbach-Wiethe disease is caused by a single mutation in the ECM1 gene, found on chromosome 1. ECM1 is one of many proteins crucial for maintaining the extracellular matrix (ECM), a supportive network that holds cells and tissues in place. When ECM1 is damaged, calcium and collagen begin to build up, causing cell death. One part of the body that seems to be particularly vulnerable to this process is the amygdala, an almond-shaped region of the brain long thought to play a role in processing fear.
In SM’s case, she stopped feeling fear when Urbach-Wiethe disease destroyed her amygdala.
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