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
Scott Pruitt, the Trump administration’s top environmental official, privately met with the CEO of Dow Chemical just before reversing the EPA’s efforts to ban a widely used Dow pesticide. Multiple scientific studies showed chlorpyrifos can damage the brains of children. Today’s Associated Press story is a clear case for why the Environmental Protection Agency and […]
The YouTube channel HooplaKidzLab demonstrates some awesome science experiments you can try with your kids this summer. Here’s another video from the channel about how to make a robotic arm out of popsicle sticks:
Scientists discovered this new species of “glass frog” in Ecuador’s Amazon lowlands. Hyalinobatrachium yaku’s belly is so transparent that you can clearly see its kidneys, bladder, and beating heart. From Science News: Yaku means “water” in Kichwa, a language spoken in Ecuador and parts of Peru where H. yaku may also live. Glass frogs, like […]
Despite the upfront cost, electric toothbrushes are much better at removing plaque than those freebies from the dentist’s office. For those who struggle to fill the American Dental Association’s recommended two minutes of brushing time, or anyone with limited dexterity, a sonic toothbrush can give your oral care routine a boost.To keep your chops healthy […]
Learning a new language will give your resume an upgrade, sure, but it will also provide a huge cognitive boost for mental tasks outside of translation and conversation. Bilingual brains have been shown to be better at handling multiple concurrent tasks, and gaining fluency in a new tongue is an amazing way to improve memory, […]
If you struggle to get a good night’s rest, consider replacing your pillows before dropping hundreds on a new mattress. You can give your tired neck a break with a 2-pack of memory foam pillows, available now in the Boing Boing Store.Each of these pillows is stuffed with cooling polyurethane foam that molds to your […]