The Internet Has All Kinds of Great Uses

Like connecting people who share a rare, life-threatening genetic condition:

In 2012, Matt Might sat down to write a blog post. The 5,000-word essay titled “Hunting Down My Son’s Killer,” which was also republished on Gizmodo, documented his and his wife’s harrowing attempt to make sense of their son’s mysterious illness. The post went viral online—setting the family down a road that could change medical research. In the New Yorker, journalist Seth Mnookin tells the story of what’s happened since.

Might’s son, it turned out, has an incredibly rare condition involving a gene called NGLY1. When I say “rare,” I mean too rare to draw the pharmaceutical industry’s attention:

With only one known case of this disorder, writes Mnookin in the New Yorker, “there was virtually no possibility of getting a pharmaceutical company to investigate the disorder, no chance of drug trials, no way even to persuade the F.D.A. to allow Bertrand to try off-label drugs that might be beneficial.” So Might went to find other patients.

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What I’m Reading, July 15, 2014

How Humanism Helps With Depression — Except When It Doesn’t, Greta Christina, Greta Christina’s Blog, July 9, 2014

As regular readers may know, I’ve been diagnosed with clinical depression. My form of it is chronic and episodic: I’m not depressed all the time, I’m not even depressed most of the time, but I’ve had episodes of serious depression intermittently throughout my adult life. I had a very bad bout of it starting about a year and a half ago. I’m pulling out of it now, but my mental health is still somewhat fragile, I still have to be extra careful with my self-care routines, and I still have relapses into fairly bad episodes now and then. And I’ve been thinking lately about what it means to be a humanist with depression, and how these experiences intertwine.

For the most part, my humanism helps. For one thing, I don’t experience any religious guilt—or religious anger—over my depression. I don’t have any sense that I’m letting down my god, that I’m doing something horrible to him by feeling glum and crappy about this wonderful gift of life he’s given me. I don’t have any sense that my god is letting me down. I don’t think my depression is divine punishment or some sort of obscure lesson, and I’m not racking my brains trying to figure out what I did to deserve this. I accept that my depression is a medical condition, and I have it because of genetics, early environmental influences, and other causes and effects in the physical universe.

“We can easily forgive a child who is afraid of the dark. The real tragedy of life is when men are afraid of the light.” Judge Richard Kopf, Hercules and the umpire, July 11, 2014 Continue reading

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I Guess It’s Either/Or, Fellas

We can re-grow our hair in the face of male-pattern baldness, or we can maintain interest in sex—apparently, we have to choose one or the other.

Maybe, just maybe, all that stuff about baldness being repulsive to the opposite sex was only trying to sell us stuff, not tell us some greater truth of the universe. Who knew?

There’s a Rogaine commercial from the 2001-02 period that I can’t seem to find on YouTube or anywhere else on the Googles. I linked to a few posts above by people who were complaining about it back when it aired, so it clearly made an impression on people. The commercial pretty much flat-out said that your girlfriend will leave you if you lose your hair. It’s sort of burned in my brain because it was so over-the-top awful.

There was a narrator asking a guy questions, one of which was something like “Won’t she still feel the same way if you lose your hair?” The guy responds “Yes…..about someone else.” Continue reading

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Finally, a Legitimate Reason to Send D*** Pics

It’s for medical purposes.

First Derm lets users send in pictures of their infected business to a doctor for a painless diagnosis.

The whole process is quick and anonymous — perfect for people who don’t have the time or desire to find a real-life testing center.

All you have to do is submit two photos of your junk (a close-up and an overview) and you’ll get a result from a dermatologist within 24 hours.

What could possibly go wrong with that? (h/t Alan)

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Isn’t it awfully nice to have a penis?

The Raw Story has a list of “5 sexual health services insurance will cover… for men.”

I’m sure someone will make the arguments for the medical necessity, under whatever circumstances, of each of these five procedures, which is completely not the point of bringing up these five procedures. The issue is the way that someone is (or many someone’s are), sooner or later, going to rush to defend these five procedures as legitimate and medically necessary while still blithely dismissing various forms of women’s contraception as mere recreational implements for being a big ol’ Slutty Slutterson.

So I’ll just go ahead and get the ball rolling by making statements I know to be counter-factual, so that maybe people who are inclined to dismiss contraception as slut pills will get some smidgen of an idea of what it’s like to see demonstrably false statements treated as fact (or as “sincerely-held religious beliefs” when push comes to shove comes to science): Continue reading

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Look, I get that the World Cup is a big deal…

…and I get that, as an American, I will probably never understand the true magnitude of its big-deal-ness—but I truly feel that it’s not worth this:

A soccer fan in China has died from sleep deprivation after saying up for days on end to watch the matches.

China is 11 hours off from Brazil, with the games airing between 11pm and 6am. Die-hard fans who want to watch the games live pull all nighters, go to work in the morning, and repeat the ritual the next night. It’s not known exactly how long the 25-year-old man from the eastern city of Suzhou had stayed up, but IB Times reports it’s believed he’d been up “for days.” It’s also not known whether he died directly from sleep deprivation or from a heart attack related to sleep deprivation. He was found in front of his TV five hours after Netherlands defeated Spain 5-1 in their first round.

It is worth noting that this is not an isolated incident.

IB Times notes that Chinese doctors had warned fans of the risks of sleep deprivation during the World Cup. Chinese hospitals saw a spike of admissions for exhaustion in 2006 and 2010 during the World Cup, and during the 2012 Euros Jiang Xiaoshan died after staying up 11 consecutive nights to watch the games.

Clearly it wouldn’t be the same to record the games and watch them during waking hours. For one thing, there just wouldn’t be enough time to watch them all without foregoing other activities. If you can’t afford to lose your job, it’s your leisure time, your sleep time, or both that have to go. (And we don’t know if this guy worked an 8-hour-a-day job, a 16-hour-a-day job, or if he did nothing at all but sit and watch soccer football for days on end.)

For another thing, anyone in Asia is generally at a disadvantage, considering that most World Cups take place in American or European time zones (I’m including South Africa in this because it’s on the same latitude as parts of Europe, and therefore still basically on the other side of the planet from China.)

Finally, I assume World Cup fandom is like most major American sports events (the Super Bowl, the World Series, March Madness, etc.) in that it’s not just about watching games—it’s also about talking/bragging/commiserating about the games. If you didn’t catch the game live, this isn’t Breaking Bad or Game of Thrones. People are not going to respect your request for no spoilers.

But damn, dude, all good things in moderation, because the World Cup (nor any other entertainment event) isn’t worth anyone’s health, let alone anyone’s life. Continue reading

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What I’m Reading, June 16, 2014

Women Are Hard To Animate. Thoughts on Representation of Women in Movies, Television and Games, Echidne, Echidne of the Snakes, June 12, 2014

My point is that these stories are picked from a certain angle, an angle of traditionally male heroism, and even when that is not the case most of us are lulled into believing that a handful of women in a large list of participants is a mixed gender setting in a movie or television series. Just think of the Noah’s Ark (which also consisted of all white characters). Probably a fifty-fifty distribution of men and women in some movie reads as a chick flick to many viewers.

One reason for all this is that we tend to see women portray womanhood in their roles, not play roles of individuals who have different temperaments, characters and so on. That’s why having a handful of women in a movie looks like inclusion, even if they all play the role “women,” because that role might be subconsciously compared to the number of dentists or gamblers or whatever in the same movie, never mind that most of the rest of that list are played by men.

Who Owns Your Womb? Women Can Get Murder Charge for Refusing C-Sections, Michelle Goodwin, AlterNet, June 13, 2014

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Our F—ed Up Health Care System

By ErgoSum88 (Own work) [Public domain], via Wikimedia CommonsA now-former neurosurgeon at a Dallas hospital is accused of multiple botched surgeries, resulting in debilitating injuries, paralysis, and death.

Thanks to a provision of Texas law enacted in the name of “tort reform,” plaintiffs cannot recover damages from the hospital unless they can prove that it had “specific intent…to cause substantial injury or harm to the claimant”

In the fight to have that provision declared invalid under the “Open Courts” provision of the Texas Constitution, the state (by and through its attorney, Attorney General/gubernatorial candidate Greg Abbott) has intervened on the side of the hospitals.

Texas: it’s like a whole other country. A shitty one.

Photo credit: By ErgoSum88 (Own work) [Public domain], via Wikimedia Commons.

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What’s the Harm?

Avicenna, a medical student in India who blogs at A Million Gods at Freethought Blogs, offers an example of the harm that can result from seeking “alternative” or “natural” treatments to the exclusion of medical treatment.

Ever had a sore throat? Impetigo? See both are caused by Streptococcus. Harmless right?

Not really. Do you ever wonder why doctors give out anti-biotics for just a sore throat?

There are two diseases you can get. One is nephritic syndrome. The inflammation of the body causes protein and blood leakage via the kidneys. While “alarming” it is more treatable.

The other? Is a thief of childhood. I had a case on friday. A 10 year old child who was 3 inches and 10 Kg lower than what his height and weight should be. And we cannot calculate the loss of development this disease has caused to his intellect. The child is tired. When he takes his shirt off all you can see is skin and bones.

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What I’m Reading, May 22, 2014

Unattributed [Public domain], via Wikimedia CommonsThomas Edison and the Cult of Sleep Deprivation, Olga Khazan, The Atlantic, May 14, 2014

For some, sleep loss is a badge of honor, a sign that they don’t require the eight-hour biological reset that the rest of us softies do. Others feel that keeping up with peers requires sacrifice at the personal level—and at least in the short-term, sleep is an invisible sacrifice.

The problem has accelerated with our hyper-connected lives, but it isn’t new. Purposeful sleep deprivation originates from the lives and adages of some of America’s early business tycoons.

The Secret History Of The Word ‘Cracker’, Gene Demby, NPR, July 1, 2013 Continue reading

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