In The Atlantic, science writer extraordinaire Carl Zimmer wrote a fascinating long article about fibrodysplasia ossificans progressiva (FOP), a rare medical disorder in which the sufferer grows a second skeleton. (Above, the skeleton of FOP-sufferer Harry Raymond Eastlack, on display at the Mütter Museum.)
Beyond a tale of medical curiosity, it's a genetic detective story that says a lot about the study of rare diseases. From The Atlantic:
A rare disease is defined as any condition affecting fewer than 200,000 patients in the United States. More than 7,000 such diseases exist, afflicting a total of 25 million to 30 million Americans.
The symptoms of these diseases may differ, but the people who suffer from them share many experiences. Rare diseases frequently go undiagnosed, or misdiagnosed, for years. Once people do find out that they suffer from a rare disease, many discover that medicine cannot help them. Not only is there no drug to prescribe, but in many cases, scientists have little idea of the underlying cause of the disease. And until recently, people with rare diseases had little reason to hope this would change. The medical-research establishment treated them as a lost cause, funneling resources to more-common ailments like cancer and heart disease.
"The Girl Who Turned to Bone
Randall “XKCD” Munroe’s Thing Explainer: Complicated Stuff in Simple Words arrives in stores today: it combines technical diagrams and wordplay in pure display of everything that makes XKCD brilliant and wonderful in every way.
Bats and skateboarders have something special in common. They both use inertia to land their tricks which, in a bat’s case, means landing upside down.
Don’t miss this amazing film.
Store more on your Mac without making a scene thanks to this microSD memory card adapter. Compatible with MicroSD, MicroSDHC, and MicroSDXC, HyperDrive sits unnoticeably inside your machine without any protruding parts getting your way. Store everything from documents, movies, music, and photos, to Time Machine backups without spending major cash on cloud storage.Instantly expands […]
Carrying this EDC card is like slinging around a handheld toolbox wherever you go. Its minimal design is small enough to fit in your wallet’s billfold, and it’s TSA-compliant so you’ll never leave it behind. It’s got hex wrenches, metric and imperial rulers, flathead and Phillip’s screwdrivers, and a bottle opener so that you’re ready […]
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