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
Dip your dollar into liquid anhydrous ammonia, dry it, and repeat. The surface tension of the boiling and evaporating ammonia shrinks the bill. Caveat: It could prove difficult to use a mini-dollar and mutilating a bill may even be illegal. (Applied Science via Weird Universe)
In many states in America, legislatures have erected punitive, vindictive barriers for women seeking contraception, requiring them to get prescriptions for safe, widely taken medications.
Designer Art Donovan writes, “I’m always looking for new and unique inspiration for my lighting commissions and the latest, cutting edge scientific devices offer a boatload of great design inspiration. From the cool, new ‘James Webb Space Telescope’ to the myriad of complex details in the L.H.P.C. at Cern- it’s a cornucopia of rich imagery.”
Taking pictures can be challenging. There are a million factors that can influence each shot you take – and unless you’re a trained photographer, you often just focus, click…and cross your fingers.Of course, you can take some of the ambiguity out of your picture-taking with this Hollywood Art Institute Photography Course & Certification package, now […]
Experienced shutterbugs with DSLR cameras have boatloads of lens options for capturing the moment. Unfortunately, smartphone photographers often get stuck with their one crummy lens, which means limited zoom and focus for their final image.Step up your smartphone’s photographic power with the Acesori 5-Piece Smartphone Camera Lens Kit, now just $9.99 in the Boing Boing Store.Magnetic rings easily […]
Some truths are universal. For one, your phone will always run out of power when you most need it. For another, the charging cords that come packaged with your Apple device will fray, split, and rip faster than Usain Bolt in a game of tag.Instead, pick up a charging cord that anyone would have a tough […]