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And Now For Something Completely Different

Genetics is at the Root of Painlessness, Which Sounds Like a Lot More Trouble Than It’s Worth


The New York Times has an interesting profile up on a young girl named Ashlyn and her family, who’ve gathered a unique group of families and children around a single condition they have in common: a congenital insensitivity to pain. Ashlyn, and other children like her, don’t feel physical pain, and while that’s a state many people might be interested in achieving, it has presented a significant challenge to her parents and caretakers.

An quick instinctual learning curve for others has been a life-long process for Ashlyn, and even now at the age of thirteen, she’s still done things like unthinkingly reaching into a boiling pot of water to fish out the spoon she just dropped. Her parents have enlisted the help of their entire community to make sure Ashlyn stays safe at school and elsewhere, but found a lot of difficulty finding other families dealing with the mysterious condition. That is, until they went to her local newspaper, which was picked up by the Associated Press, which made it to the internet, at which point they were offered several appearances on national news shows. That was the point, finally, when scientists, researchers, and other families (including two adult twin sisters with the condition) started to contact them.

From the New York Times:

Dr. Roland Staud, a professor of medicine and rheumatologist at the University of Florida, heard about Ashlyn and invited the Blockers to Gainesville, where for 15 years he has been conducting research into chronic pain. The implications of her condition were profound. She was an anomaly of nature. Over the next few years, Staud tested Ashlyn’s genetic material and eventually found two mutations in her SCN9A gene. That same gene, mutated in a different way, led to severe pain and chronic pain syndromes. If he could understand how the mutation worked in Ashlyn, Staud theorized, he might be able to turn it off in people with chronic pain.

Inspired by one of Ashlyn’s dreams, her mom organized an outdoor weekend getaway for children with congenital insensitivity to pain and their families, with hayrides, s’mores, crafts, and other families who understood why they were all keeping an eagle eye on their children for bumps and scrapes, and testing each s’more to make sure it was cool enough. The entire article is a pretty fascinating read, full of some intrepid mothers, daughters, and sisters dealing with the downsides of what in many fictional stories is designated a superpower. You can find it here.

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  • Anonymous

    I watched a documentary on Netflix about a few girls that have this. I can’t remember what it was called, but it was fascination. And frightening. Seems like every day there is some new rare disorder or disease that children can be born with…I’m going to be so paranoid if I ever have kids!

  • http://www.facebook.com/people/Anna-Lena-Dubé-Fuller/727075494 Anna-Lena Dubé Fuller

    This just reminded me of the character of Neidermann in Girl with the Dragon Tattoo series. But he was a bad guy so not really relevant, but it’s always interesting to hear about real life cases of things you only read about.

  • Thingy

    I actually expected people who can’t feel pain to be psychopaths..I’m positively (?) surprised that this isn’t the case. Although she’s probably still able to feel fear and would feel pain when suffocating.

  • http://www.facebook.com/Daxxy Mary Warren

    Maybe this is what stunt performer Ryan Stock has. He recently performed where I live and I was in the VIP area talking with his fiancee. I can’t remember the topic but I remember her grabbing one of those stick on poppies and a piece of Ryan’s arm skin and sticking it through. He didn’t even notice, when asked later if he felt it he was like “wait… you stuck a pin in me?!” Crazy stuff but definitely understandable how dangerous it would by for kids growing up.

  • Megan

    Umm, that’s not how antisocial personality disorder and psychopathy really work, and I’m placing at least some of the blame for your misinformation on that stupid James Bond villain in The World is Not Enough (Renard?). While the ability to understand/recognize physical pain cues is important for knowing what specific things not to do, in order to avoid hurting yourself/others (not sticking your hand in a flame, etc.) what makes someone a sociopath, aka Dexter, Hannibal Lecter, Bernie Madoff, is not *caring* when you hurt other people.

    Not being able to feel/understand physical pain is not the same as not being able to empathize with someone else’s emotional pain. So no, this girl wouldn’t be able to understand how much getting burned hurts, but she still feels/understands the full range of emotions. She is absolutely capable of understanding and feeling bad about her mom/sibling friend showing sadness/surprise/fear because of a physical injury, even if she doesn’t understand how the injury itself feels. The only time not being able to feel physical injury drives people to a life of crime and craziness is in badly written spy films. Hopefully this clarification helps!

  • Molli Weston

    This article made me sad for the sheer fact that I realized something… I could never have kids. Because if that was my kid, I’d think she was a freaking super hero and teach her how to fight crime. Or turn her into a MMA wrestler.