There are less than a hundred documented cases of people who cannot feel pain and suffer from a condition called congenital insensitivity to pain. Josh and Chuck discuss the dangers and symptoms of CIP and related disorders in this episode.
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It's ready. Are you welcome to stop? You should know how stuff works that pay and working to the pod cast on Josh Clark, I can feel pain with me- is always Charles to be shock. Bryant in he declared shock can feel pain, ok as well. I just I want to make a hundred percent sure. That's the second. Take, though, and you didn't really have to do it twice- we could effect at this time. I wanted a realistic response. Israel, just pinch me hurt if you could tell him you're right, yeah, ok, how you doing besides the throbbing for our great sir in you do pretty get good everything's just peachy, including with my hair Josh's goofy, shakes his head
They can a gift it. So he looks like a year the patient, from some mortuary had the surgery or something innocent on his brain. I didn't give my hair right. Yeah and lady. Did I? Have an eastern bloc hair cut them yeah, I'm so other, and then I'm feeling pretty good you're right teeth, felt emotional pain. With your I'd haircut, I did which, by the way Chuck is different from physical pain. It is you knew that, because of a yet to be released, audio book, that rights forthcoming, slow teaser for everybody can try, but there are actually people out there Chuck who cannot feel pain straight up, don't feel pain. Yeah. It's amazing is very rare, but it happens. It is rare chuck. Actually, the only hard number that I've seen is sixty sixty reported tat
worldwide, sixty since nineteen. Eighty three: actually I've got thirty five in the United States, as of now I've seen I saw their numbers well, I've seen people who just plum said Have no idea how many here could be under reported sure, especially with younger kids, with what we're talking was called congenital insensitivity to pain with an hydrolysis right. Otherwise what we're gonna call Sipa for short because as much easier and that is actually part of a it, it's a sub type of a larger disorder called hereditary century and autonomic neuropathic, and this is actually the type for supper is tight for it as eight as a n riots in it's the most severe. Well, we'll get into what an all means, but it's the most severe. We will those actually kind of recent famous case of it. There is a british position.
Doktor Jaffrey Woods, you heard him tat, never see one of the g o F, guys yeah he's bridge. He spoke programme with two ends in it, but Doktor Woods travels to Pakistan fairly regularly and While he was there. He heard about a kid who used to pass like thick needles right through his arm, walk on hot coals right and showed no the feeling pain whatsoever and he wasn't in the Gym- rose circus. No ok, he wasn't actually, but he possibly could have done a lot better for himself and just on the streets of a whore yeah right with Doktor woods heard about this guy. Kid. I was interested in finally got around trying to go, see him right before he could see him the kid around his fourteenth birth. They died. Actually, he was. He was dared or he was doing it from money. What everybody jumped off a roof and died ass by doktor words,
hola this kid's family and actually found out that a bunch of them have no sensitivity whatsoever to pain area yet, which is also call analgesics, others either word for another year. Painkillers recall analgesics. Sure this will be like the state of not having pain or having reduce payment, be annulled. Geez. This isn't just reduce pain as a Czech now we're talking about? No, you can feel pressure, but you can feel no pain, and you can feel no heat or cold. You can feel no temperature understand either right. That's the one with an hydrolysis. Yes, exactly! Ok, let's talk about the pain. Part first talk about pain in general, how do we feel pain? Will Joshua you're nervous system is where all this happens and we're talking about your brain right? Here's your brain on paint, yet your cranial nerves, spinal cord, spinal nerves and other things like your ganglion reset,
since receptor stuff, like that rock and your nerves carry messages to your spine through your body to your spine, spying, here's to your brain, and the receptors. If you burn your fingers, somethin will send the message up to this blind to the brain that says yet burnt. It hurts right in it sends a response messages that moves your hand away, reawaken exerted by touching a hot stove or something you can take it from here that, because you're you're, Mr Doktor Guy, I'm Doctor Clark, thank you Chuck, actually, the sense of pain, the experience of pain is called, knows, deception right yet- and this is the experience of physical pain as a response to noxious stimuli and there's actually for categories of noxious stimuli is mechanical electrical thermal and chemical right and we have actually specialised nerve. Endings receptors called in those sectors that are responsible, just
for sending pain, signals these peripheral nerves right. Thank God, for that yes, actually is as painful is pain, is right. We haven't for a reason to like you said you know you such a hot stove in your brains, as did your hand off right right. We also develop what one one theory of how we develop a fear which is good in and of itself, as well as through direct conditioning. It's one of three ways: we we learn. Fear sponsors is through direct conditioning and part of direct conditioning is experiencing physical pain. Right has once you ve hit the hot stuff once you know that the stove, as always
are you exactly or if you don't kid, maybe two or three times, but eventually you gonna pick it up right now what happens with Sippar? As far as I understand it actually did. You notice is well there's there's not a pet explanation of if you have sippar. This is exactly what happens to you yet while prices so rare right, but when you think that if they, get this the group a patient's together. They would find like ok. Well, yes, all of you. People are lacking no sector here, Sir, some patients, the nose, the sector's, aren't there in other patients, the the peripheral nerves that the necessary measures are attached to or uses yeah information, highway right arm. Aren't there or else there not enervated right up there
a lot of different ways that this this can come about, but it all results in this cardinal diagnosis or diagnostic tool of Sippar witches. You feel no pain and you are responsive to temperature, either right, but nerve kinda is there right. It depends on some of them: innovation in others. The nerves are conducting. Capable of, and specifically with an hydrolysis. I think, there's no there's no innovation of the nerves in the sweet glance. So when or to get hot. There's nothing sending your brain. The message right here get hot. We need to start sweating, so we can call down while yet go ahead and say that that's the aim is in hydrolysis in after the sip part, and that's the most of your case in that's when you don't sweat, which you know how I sweat
like you, we don't have an address, remember the aquarium, sweated underwater in like forty If we wanted to, I mean there's like little chunks of ice floating on the surface of the water and you Eddie you're cartoon sweat, jumping off your forehead. I did so as I could handle the Enhydra his part, or at least a slight version of that I could deal with that. But in this is, are these are Akron swift Glance or Akron glance that that are responsible for regulation of body temperature, so what if they found with the addresses it seems fairly uniform in that respect, that we, the super patients, don't have innovation, meaning the nerves aren't becoming activated yet in their sweat, clients yeah. That's especially, I mean it's bad enough to over me because you can overheat says an adult but scary, with babies with super, because a baby can.
Her head and die like very easily well yeah. Actually, I think twenty percent of people who have supper die before or by the age of three May. I saw that that and I think another quarter, of those deaths, are from sepsis from an untreated infection right. One of them things about not being able to feel pain, as you can cut yourself and if you're a kid you dont think well I'd better treat. This cut and at the same time, you're not crying. So your parents are alerted right answer. This can go entreated become infected when they cut is infected. The bodies immunological response raises your body temperature right. It can lead to a fever and unchecked. This fever can actually lead to brain damage. So a lot of patience with Sippar who made it passed, you know three or so have some.
Form of mental retardation yeah. They are also software will get to the Tipps later. But since you brought it up one of the tips for small kids as they will teach the child to recognise blood and teach them what that means. So, if you see you need to confine mommy and Daddy Roebuck. As you know now, you're hurt, but that's a bad thing to happen. So come come my mom and dad Yet- and I thought these tips that, like you so we'll get you in a minute or blue pretty clever right or come fine, mom and mom or dad and dad. We want to deliver century guy, like minded around here or just Mamma, to stand or Uncle Charlie user Grandma Grandma yeah or Grandpa and Grandpa there's all kinds disintegrator. Let her know somebody the first person to be legally pronounced a sexual was legally pronounced they sexual. Unless couple we say very strict, very interesting. I saw you on that. Ok
Where are we chuck? Let's talk about Sippar, let the medical history of super. Ok, ok, as far as I could find, it was first described in eighteen. Forty seven and described is what is going on here, yeah exactly in actually in the sixties. I read an article nineteen sixty that was based on a hypothesis that people who feel no pain were actually. It was actually psychological disturbance. A mass of affront to their ego, that as a response, the the response to their ego mounted resulted in the loss of this. The pace of that's just sixties notion it totally so that cat this can't feel pain he so out there. So far out there is a doctor who is who is? saying this literature dumb certain patients- and he was describing like how the diagnosis went, the diagnoses went than theirs is one poor guy in the fifties.
Who he was a Skype, is a pretty nice upbeat, bright guy and he goes to the doktor and, like I can't feel pain and actors, like oh yeah, see kissing his hat doktor he's got like a glass Canada cigarette, neither a and in the little reflective thing on his forehead. He ran this guy through a battery of tests, including squeezing his testicles running in electrical current across his lower teeth and shock. It gets worse, take skin and muscle biopsy without anesthetic, what did he do it reason was he like what about that? I feel that kid you imagine like this. Doctors, like oh yeah, didn't: try there yet Keith ratcheting exactly well yeah, so the site, Magical idea was discarded pretty quickly and now because wherein the aid
the genome has been cracked Sol genetics right yeah. I guess which guide mention to that: think they have narrowed down to it. Mutation of e t r K, a parentheses, anti art one gene which appears to control nerve growth. But again they don't know for sure they just think that might be the culprit right check. That seems to be the likeliest candidate, because that gene actually is its responsible for producing nerve growth factor right which goes on recruits neurons and nerves. Is it. I guess it would be neurons to become no sceptres Erika and a so that wouldn't happen right right, but speculate solo that right. Yet we still have an idea. I mean sixty cases reported were why thirty, five in the? U S, maybe, although it does seem like you
the genetic like that kid in Lahore, Pakistan, when he died and the doktor you see his family and found out. He had siblings that had the same condition. Sure that suggests there's something environmental it close to the home or genetic and that's kind of what their leading to yeah genetic part right Josh? They do think or do they know for sure that it's in autism all recessive disorder? I don't they do with its that's, how I take it right. The words, which means that both of your parents must pass down a copy of this gene, so each one to your parents as a mutation, and it's not related to gender anything, but they do know that both your parents at to give it to you right, so that this private makes it rare as well well yeah. Another of your parents have to have this really rare thing apparently also hasn't it doesn't affect. Every ethnic group are really yeah
I was reading a no study on this from I think two thousand, and it was in. I think Jerusalem, TEL Aviv, one of the two and they get together a bunch of kids who had skipper and some of them are related and they took a family history and found that I think the nine of the thirteen participants parents were first think cousins her. So I wonder how much that has to do something to air interesting errand shrink. So should we talk about some of the problems? I mean they're, pretty obvious, but there are some that I didn't we will get. Let's talk about, raising a baby was sippar. How would you first start to recognise that your kid has Sippar? Well, that's a problem because the first way you'd probably recognise it.
Is seen witnessing an accident that should cause your baby to cry in your baby? Doesn't cry right, that's like to have you ever heard the d, a discovery of ether and nitrous oxide is anesthetic. Now right here will actually happen in New York City, but a physician from our first sitting name Mr Doktor Crawford long yeah. I did a little book report on him when us like the fourth grade. He was like our nineteen sixty scotch and cigarette doctor, and they like the party teacher, and he noticed that people on in the debt having either bender would run into walls and gash their foreheads, and not have any response to what so ever aside from laughing hysterically right, exactly, hopefully get Alice blood while yet so this there's a similarly there for me to add that tangent, we have proper long hospital here to look at you. Bars so like it said, the first thing will happen is apparent, sees an accident and
child doesn't cry so we're gonna have some problems getting diagnosis, because it is a rare the other meantime. The kid could end up with an infection sure and dive overheating or suffered some sort of brain to natural one. The other big problems are the baby is when a baby tease a baby, just gnaws crazy, but if they don't feel pain, they may not like straight through their little baby finger without even realize right, either tongue, their lips as common injuries as well, which is awful there's. Also, I scratching yet said the only teeth. They said that some parents elect to have the teeth, baby teeth removed altogether right here and wait for the adult either come in at which there an age where they can understand, like don't fight through your finger, but that's not get either cause in your child, Hasn t that makes it harder to eaten right, but it's like
baby food for many many years old. She read through your top priority in a cell is when you just mentioned. I scratching yeah you if you are just Having your eye or whatever you pretty, that's no way to stop re few hours, a patient, a sip of patient, you dont know when to stop. I was reading about this five year old girl who blinded herself she still see. Shapes, I believe, but she had won. I removed and scratched the other eye while ensues. Five incur barely things done it to herself while another tips and where There are a lot of parents who like to have little baby goggles further for their child, so they can't get to their eyes, which has sat near Europeans. This is interesting. They oil, hunger, veins right. So eating is something they realize they should do so they sometimes sippar patients will set a clock to remind them to eat or
to use the party right, because one of the ways that you know that you have to go number one or go number two is from the discomfort involved right. Your bodies alerted like you, need to evacuate your battles, and so you no evacuate your pals. But if you don't have any sense of discomfort whatsoever, you aren't going to go to the bathroom. You can suffer constipation, all manner of horrible results from that from holding it too long, yeah for sure fractures, very common, obviously in slander handed adore, won't feel the panes won't realize you get a broken and enjoyed too. This is something I hadn't thought of either gametes but concern this like how many times have either one of us move our chairs during this podcast The reason we're moving shifting is because it's become uncomfortable sure to Lena
joint. So we move and put the our weight on another Julia that your body telling you too, to shift so you're, not putting too much stress on anything right. If you dont shift then all that way it is on that joint, and this can actually results in Charcot joints. Now these are joint were basically, you can't feel pain to develop Charcot Joint, because when you It is the result of like a prolonged and repeated destruction of a joint right or several joint, and what happened is like little bone fragments break off, and then you have bone pieces grading in the joint it filled with fluid, and there is definitely a point of no return. They can lead the amputation, limb replacement. That kind of stuff cheese- well one of them since we're gonna, do indeed
problem Tipp thing, one of the gypsy well, I think we have suffered one of the things that they recommend is occupational therapy, so they can teach your child different ways to sit, and I do fiscal task to like put the least amount of stress possible. Joint re or they may say, you're kidneys being a wheelchair a little more than the near. She is true and again very sad. This whole thing is just one the most depressing rare disorders I can think of wave. If you have a baby that has super. You should probably do a regular check over your child, like you need a baby proof. The heck at your house, like its baby, proved anyway, but you really need to go overboard with softening corners and things like making sure the stove and anything dangerous is inaccessible. The knife drawer that gonna thing, but you should also check your check, your child, for it
till her old enough to do this on their own chicken for injuries in a couple of three times a day, also because of the end addresses the alot of families up to moved a cooler climates, just you know to protect against overheating yeah and I'm Katy Lambert wrote this article of stuff. You miss in history class, right our cohorts and Katy suppose that, as far as getting exercise, which everyone needs, that swimming might be a good good thing for them to do and economic sense to me yet be cool her than the the ambient water temperature yet her, so it could still led the trouble I guess getting. But now I wondered about that because I mean, if you think about it, if you sweating underwater than your bodies, saying indeed be cooler than the ambient water temperature yet her, so it could still lead to trouble. I guess getting cool water, it maybe dont swim so much that you're gonna be sweating had he might by doktor checks, advice it's getting
we started shut. Although the water is a good medium because it's easier on the joints law, I think it's what you recommended nature There is no cure, know that that has happened yet, and it's so rare that it's it's when they things it's hard to get a cure. When you don't have anyone to test it on other chuck, don't you think the advent of stem cells will probably cure everything. I have observed
Let me think about it. It is a genetic flaw, misery that means that an enzyme or protein is being produced right. So you just use stem cells to generated enzyme protein Buddha, tighter Clark, no more Sippar says Buddha. Either. Kepler websites should guide unplug, gesture gift of pain. Is a website said it by family, his daughter s, supper, and if you want to have your heart broken and learn a little bit of it there and help roberto dot com is another one that details a young boy with silver and chuck. Also, there is from what I understand it: pretty good documentary called a life without pain by director, Melody Gilbert, and it's about Sippar really supposed to be pretty cool. I haven't seen it, but anybody interested way want to read,
that the object it up and I say, look for pain, podcasting feature as he was given on paint, Josh and shouts house of pain. Do you know how many times you mean a pin? Tutoring, I think, can be rough of leaner more than once more I if you want to learn more about super type C Ip, in a handy search bar housetop works DOT com Emmy this time. For this male, yes, Sir, when we were actually check. I want us to give a special shout out. It's right. Three sisters, triplets in fact, with puts. Triplet listeners yeah Helen Spence in ECHO and all three are voracious stuff. You should know listeners, economical, name yeah, I like it spends goes by zebra. Apparently this came and when I was on vacation because you replied, I did
promised to shut out, never gave it yeah. They do a shout out and re are now, though, I'm inclined they make me over the calls in irish and you know we typically dont- do shut out as we get request and there are too many of them ever how many triplets we have listened exactly of something remarkable or if you want your name, read so badges Tell us your quadruplex immediate three names, so you guys keep the fort down thanks for listening. Girls and we'll get to listener male. I think yes, but we should probably plug Facebook and twitter tweet between we are children of next generation that model daughter. Why? I think, no your ex on why the suit That's it we're, definitely not millennia. So yes, on Facebook now for sure we're on Facebook consolidated. Are we had multiple pages is kind of a mess
we're all consolidated we're personally putting stuff on Facebook and talking people it's gonna can financial. It is you're, doing a heck of a judge, fuck you, you can type in stuff. You should know on Facebook Sandy Search bar and that should bring up our page go in joint curious to see how many people join you in it. As long as we have more than all the other partners combined, I'm fine same goes for twitter to do you have that same mark that same desire, the same goal, yeah two of them brace Twitter, had can't believe it yeah, I'm tweeting chucks. First tweet was Larry S eyes. I imagine all successes.
It will be our twitter name. Is s why s cave podcast? That's your twitter name at yet so escape. I can write the little at symbol, sure for those of you who don't know how that works. As you can check this out, joy not follow us and we will be interacting right. Regular, come down from our ivory Tower Josh's call this earthquake survivor read this one, not pretty remarked you your back you're, not a vacation, hey, Josh and shock. I just wanted to email and say thanks for unknowingly, doing a lot to keep things normal for me in the least normal of times. Let me explain: I live in Santiago, Chile. In late February, I was invited to the camping trap into place down South called ISA. Malta, do you, like my phonetic financing,
it's nice! It was all really last minute, but before leaving a managed to grab a hold of your latest podcast, which was how Braille works, but it on me Ipod thought of my of the long bus ride, and I only that one because being a true fan, I'd already listen to the others, so good for you, Ignacio honours. Night camping on the island. We had an eight point. Eight Richter earthquake, if you remember, and we were pretty near the epicenter we had to run from soon Army, which only gave us about seven minutes to get the higher ground after the earthquake, our tents and Oliver stuff was washed away. We never saw. Again turned out. We had an easy most of the homes on the island were taken by the wave and we can't, without tens, of course, with the locals up on a hill for a couple of days for being able to even take a plane to start or journey back home, which was difficult Josh, because the bridges were down streets were cracked and there was no gas at the gas station. That kind of thing
for like five days in the middle of it all house feeling really bad about everything, though grateful for being alive. I was that really knowing about my friends or families in cellphones were down and was in the middle of the least normal situation. I've ever been, then I remember I had your podcast pulled out Ipod, which I had saved my fanny back and just listen with my eyes closed, really happy, because that was for the first time. The only connection to normal I had that is awesome illegal while it may the huge difference. I wanted to say thank you so much like you guys to stop and think what a different you can make and oysters lies. So, let's stop and think for a moment. I feel good. Haven't we be quiet ever never, really
you have a loyal listener for years to come, that is from Ignacio thanks. Ignacio is alive and well. Thank God. Did you hear about the days our family were the days arms their family from Haiti who survived the port au prince? and they had a son who lived in Santiago whose, like come, live with me, you're getting they moved Sonny. I go just in time to survive. The chilly click survive both as well, and since you said that that way, the name, what you say the naming place, was Santiago. More difference deserve the days arms yeah The family does. Does the plane Illinois, we should say what we give We didn't know it's apparently displaying DES planes, dutch boot sounds very strange as it would seem like it would be silent, but every
made fun of me SAM. You sounded like tattoo with the plane the plane. So I think I said now where the same rendered changeable. My pain is your pain. You can you can switch. Are guts right abilities. So officially I would like to switch. Villagers is slightly smaller than my thinking officially would like to make that correction. Is this planes yellow noise in its clear Yo Clare was calm and in Canada they called canadian bacon bacon? Yes, Canadians. We have corrected that for two years. Now, We can stop with emails, it's a joke. If you have a correction, you wanna sent shock or me, or you want to get into some email combat over a topic in issues like that citizen. It to do not cite Wikipedia to support your claims.
Or else you ve lost right out of the gate, yet do better rapid up, send it to stuff podcast stuff works that camp more on this and thousands of other topics as it has stuff works that com What more housetop words check out our blogs on the house of works? Not come home, page brought to you by the reinvented two thousand twelve Camry. It's ready are you text they will be, before you know it everybody but relax because H in black as your one stop tack shop, their tax pressure experts, certified and train and eighteen are black, has up front transparent pricing, which means you know the price before. Again no surprises and with office is open early and late. It's easy to walk in, make an appointment or just drop off your documents. Do your taxes outlawed?
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Transcript generated on 2020-01-28.