Skip to content

Emmy-nominated video shows painful reality of living with the rare skin disease EB

Last year, my colleague Mark Hanlon made a beautifully haunting video about a young man living with the devastating effects of epidermolysis bullosa. It accompanied a Stanford Medicine magazine article on the disorder, which, in the words of writer Krista Conger, is "incurable, fatal, and nearly indescribably painful."

We learned today that the video has been nominated (link to .pdf) for a regional Emmy, an esteemed honor.

It's a difficult piece to watch, and some viewers may find the images disturbing. (I certainly did upon my first viewing.) But it's also an important reminder of the need to find a treatment for EB, and an illustration of the strength and bravery of patients (and their families) suffering from this terrible skin disease.

Previously: The worst disease you’ve never heard of: Stanford researchers and patients battle EB
Photo by Max Aguilera-Hellweg

Popular posts

Sex biology redefined: Genes don’t indicate binary sexes

The scenario many of us learned in school is that two X chromosomes make someone female, and an X and a Y chromosome make someone male. These are simplistic ways of thinking about what is scientifically very complex.