A captivating slide show on NYTimes.com chronicling the life of 63-yr-old Denise Sherer Jacobson, who has cerebral palsy, but lives a life that is primarily independent:
…she considers her body “as being on the spectrum of human variation, with nothing very notable to point out.” Her life is lived by that mantra.
Philanthropubs are about to be a thing.
That’s right, having a beer can now be considered a charitable act. Well, if you live in Portland or Washington, DC.
CLICKS || 08.08.12
IN NYC:
- Bath Salts and Fake Marijuana are now off-limits in NY. Will be interesting to see if we can actually keep this stuff off the shelves, given how easy it is to manipulate the drug formulations.
- Cheerleading isn’t a sport. Really?
EVERYWHERE ELSE:
- Kids’ cholesterol is down. Do we have trans fat regulations to thank?
- Hoarder brains. Because everyone loves a hoarder.
- School administers pregnancy tests to female students.
How is the digital age changing patient-hood?
I came across the story of Maya Nieder, and her parents, Dana and Dave, on Bloomberg Businessweek - but they’ve been out there for a while, in a bunch of different ways.
The Businessweek article was most interesting to me - the Nieders have been working with a researcher at Washington University in St. Louis to “crowd fund” gene mapping for their daughter, soliciting donations online so they could diagnose Maya. That’s because she was born with what seem to be inborn developmental delays, and no one knows why. Her exact array of symptoms have simply never been seen before.
Last month, that crowdfunded project bore fruit. The necessary money was raised - much of it from online donations - and when scientists mapped Maya’s genome, they found the gene they suspect is behind her illness. It won’t help her be treated - at least not yet - but now her parents have a way to frame their daughter’s disease.
The Nieders are fierce fighters for their daughter. Before this latest bit of news, they’d gotten some coverage in Time magazine for their battle to keep an app available to them via the Apple Store - it helped Maya communicate (she can’t talk), when other, more traditional technology couldn’t
All of which raises the question of how this digital era is changing how we think about disease, as patients and as doctors. The Nieders promoted their stories via the web (specifically, Dana’s blog, Uncommon Sense). Their doctor has been a TED Fellow, and is funding his genomic research online in conjunction with grant money - actively marketing his patients’ stories via the web.
Will these shifts be good for everyone? Certainly, it’s always been true that the loudest patients got the most care. But with the internet, those patients, and their doctors, have been given a megaphone. The shifts at work will be interesting to see play out.
CLICKS || 07.11.2012 - 07.13.2012
IN NYC:
- DNA match in murder case — even though it’s false — shows just how often NYC cops are using genetic analysis to solve all kinds of crimes
- NY can’t force cigarette retailers to display PSAs with rotting teeth and brains as part of their effort to discourage smoking
- NY man sentenced for organ trafficking
- Scary story of Queens boy who developed a fast-moving infection
EVERYWHERE ELSE:
- Judge keeps Mississippi’s only abortion clinic open
- Gene mutation raises hopes in the quest for an Alzheimer’s drug
- Jesse Jackson Jr reveals he is being treated for a mood disorder (disputing online reports of a more physical condition, like Parkinson’s)
- Are urinary tract infections becoming incurable… because of antibiotic-laden chickens?
- Will the farm bill cut funding for food stamps?
- DNA shows how Natives migrated to North America
CLICKS || 07.09.12
IN NYC:
- Obese patients are weighing down hospital budgets, as hospital administrators are forced to buy special equipment that will handle their girth
- Metal slides are hot in the summer
EVERYWHERE ELSE:
- Reality show about breastfeeding moms in the works?
- This weekend, the NYT started a series on cancer breakthroughs. Their first two pieces are up: Leukemia treatment points towards the future; ups and downs of a new treatment
- Making therapy for men… kind of funny
- Do we need to drink milk?
- Should McDonald’s be allowed to sponsor the Olympics?
- Government’s “Biowatch” system plagued by errors
- Investigators sort out clues in the Cambodian Mystery Disease
- Is “Big Organic” good for us?
How much do Americans want to lose weight?
A lot. That’s the lesson of the FDA’s approval of Belviq, the first new weight-loss drug in thirteen years. Patients lost, on average, just 5.8% of their body weight over a year — though some lost much more. Side effects included memory loss. Actually - a better question might be how much do American doctors want Americans to lose weight? In the past, weight loss drugs haven’t sold particularly well.
CLICKS || 06.25.12
IN NYC:
- Hipsters beware - there’s medical waste on Rockaway Beach
- Asthma from the Gowanus Expressway?
- More on that NYPL exhibit on lunch!
EVERYWHERE ELSE:
- All obese adults should receive counseling?
- The rise of the pharmacist
- A deeper look at what the loss of those autistic brains really meant
