Getting Better

Update: 2017-02-108
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We expect a lot of our doctors, but they don't always have the best tools to treat us. This episode, TED speakers explore new ways to think about disease, diagnosis, and the delicate art of healing.

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this podcast in the following message are made possible by learn best and online financial advice company that believes you should focus the same attention you give to the health of your mind and body to your finances its wellness for your wallet get a fifty dollar credit when he signed it today or go to learn vest dot com slash Radio Hour this the the is the Head Radio Hour the groundbreaking Ted Technology Design at Stanford and Ted conferences around the world gift of the human had to believe in impossible the true nature of reality beckons just beyond those talks those ideas adapted for radio NPR guy rise and I'm sure today getting better be the end can hear me scare us yeah how are you I've been getting slowly better for the last five years this is Jennifer Brandt and by better means a bit healthier Jens of filmmaker now but seven years ago before everything after life changed forever she was a grad student at Harvard this part of my temple and I thought that that they would do for the rest of my life that I would be a professor and everything seemed to be falling into its right place I was with my boyfriend at the time in my Cafe Mom has been Omar Omar age and love to hike and camp and travel all over the world which is how they ended up trekking in Kenya a couple days into the trip home are kind of bug he got really sack he was throwing off the whole time and had really high fever he eventually recovered but as soon as they got back it was Jane's turn she got really sick and I had a fever for ten days that at its highest was one hundred four point seven degrees how did you go to the doctor that point I didn't go to the doctor because usually when you have a fever it's viral and they just tell you to go back home and drink chicken soup and I just stayed home and I thought I would just get better like Yo is due in in and at first didn't seem to work after those ten days her fever broke but the next day she started to feel really dizzy I couldn't I bought the bathroom without ripping the walls and from that point on Jen started to get sick all the time I was getting some type of infection and almost every month that sort of when everything started to change because even when she would recover from the infections and never felt like she did before she gets sick she was always tired her muscles hurt even walking became painful I started having numbness on the right side of my face that then started to become you know the right side of my body and that I was at a restaurant with some friends and after dinner when the check came I couldn't sign my name I gave staring at the check and I didn't know how to tell my hand how to draw the letter J rule throughout the first year you were going to doctors basically said he is going on exactly and I kept trying to find help I kept going to doctors and first it was sort of saying well you probably just have an inner ear infection and your Publix little tired and that in its eight to become something more like maybe you have some anxiety and you're probably depressed Jen went to every specialist she could find from infectious disease doctors to endocrinologist and cardiologists and finally to a neurologist who said she might have something called conversion disorder that's my symptoms are being caught by a distant Rama that I cannot remember and I pushed him on this a little bit because I thought OK or shine to a man or a logical sometimes but this all began with a really high fever and I've had all of these infections and or those also it's like a Sonic and he said yes everything that you've been experiencing a cyclist A Matic that the symptoms are real but that they have no biological cause haven't you feel in here that I'm aware that I can say or am I I mean my first reaction is doesn't make any signs it was the first time anyone ever doubted my own story may my own witness an account of my body and that in my second reaction was Well if I really have a psychological disorder may be one of the symptoms and psychological disorder is that I would have a hard time accepting it and so I just wanted to get better I just wanted to get back to my life and anything that was going home to get better I would except the ER so that afternoon Jan walked out of her neurologists office determined to get better doctors should be seen were saying just try exercising so bu she decided to fight her physical pain and walk home and I'm as soon as I walk the door I collapsed and I couldn't get up for four months that was kind of this big getting moment for me because up until that point I would get second I would get better but I've never been the same since that walk home I have never been any better than I was that day the e pretty chance that you might know somebody or hurt somebody like Chandra hear her story isn't all that uncommon because there are still so many unanswered questions in medicine diseases we don't understand others we can't hear at least not yet Spanish Oprah can explore some of the ideas out there about getting better doctors researchers and even patients are trying to change medicine to find better answers was grappling with felt so big and so is terrifying that I wouldn't survive at the fact that other people had gone through that and had survived give me hope that I would be able to find a way to come back to Jen Gray later in the show and find out how she eventually got the right diagnosis the first have you even begin to diagnose chronic condition that is impossible to see or even measure which soak it can be described like a typical patient that comes to see you all the typical patient comes to our clinic has seen two or three doctors before they come to us they've seen their pediatrician or the family doctor and when nothing's working they come to us says Elliott Crane he's a pediatric anesthesiologist what I do predominantly at the present time is pain management for chilled out most of us think of pain as a symptom of an injury or an illness but Elliott's patients are children with chronic pain pain that lasts a lot longer than it should our typical patient has had their problem for six months to multiple years they're missing school they're not going on in playing with their friends are not going to the mall on weekends their lives are completely off the rails and a lot of these kids did have something that hides the pain at first but after that problem that caused the pain goes away it heals the pain doesn't go away the nurses changed the nervous system has re wired itself even though the inciting problem is long gone and in those cases he says Pain is no longer a symptom it's actually the disease the carousel Ukraine had stage that was the experience of my patients Chandler she was sixteen years old after when I met her and she aspired to be a professional dancer and during the course of one of her dance for her so she fell on her outstretched arm and sprained her wrist now you would probably imagine if she did get a wrist sprain is a trivial event in a person's life but in Chandler's case that was the beginning of the story this is what her arm looked like when she came to my clinic about three months after her spring purplish in color it was categorically cold to the touch the mussels were frozen paralyzed the pain had spread from her wrist to our hands to finger tips from her wrist to elbow almost all the way to shoulder with the worst part was that she had Caledonia the lightest touch of her arm to touch her hand the touch even of a sleeve of a garment as she put on cost excruciating burning pain how can the nervous system get this so wrong well the nervous system has plans to study changes in it morphs in response to stimuli that's in fact what happens with chronic pain and that's why pain becomes its own disease the the sole what's going on that's the million dollar question I suspect in the end maybe in a decade will have identified some sort of a gene gets turned on or gets turned off and allows pain to become clarified is it common for doctors to understandably just can't dismiss it as psychological was absolutely for doctors for teachers you know somebody can have a surgical procedure may be a hernia operation and five or ten percent of people develop persistent chronic pain even after the incision is completely healed and there's no residual hernia that anybody can find in the pain is still there in the pain can be very very disabling and it's oftentimes attributed to psychological or psychiatric condition and I must say it's especially the case that is attributed to a mental disorder if the patient is a woman at the position is a man wow I mean for patients that must be so incredibly frustrating to not be taken seriously just because they're there isn't an obvious injury or illness or something wrong with them well pain is is what the patient tells you it is I can't measure it like I can measure a blood count or temperature or something like that and somebody comes in and says You know I think I have a fever and take her temperature and it's ninety point six you can say Well no you don't have a fever but if somebody comes in and says I'm having terrible pain in my back and have a normal physical examination you can say that having peanut that is what they see it and that's very frustrating of course it leads to all sorts of misinterpretation you probably imagine that the nervous system in the body is hard wired like your house in your house wires run in the wall from the light switch to a junction box in the ceiling from the junction box to the light pole and when you turn the switch on the light goes on and when you turn the switch off the light was off so people imagine the nervous system is just like that but the situation of course in the human body is far more complicated than that it's almost as if somebody came into your home and re wired or wall so the next time you turn on the light switch the toilet flushed three doors Down or your dishwasher when time or your computer monitor turned off well what do we do about that we treat these patients in a rather crude fashion at this point in time we treat them with symptom modifying drugs painkillers which are frankly not very effective for this kind of pain and most importantly we use a rigorous and often uncomfortable process of physical therapy and occupational therapy to retrain the nerds in the nervous system to respond normally to the activities and sensory experiences that are part of everyday life Doctor L Ukraine in a moment he'll explain how we can change the way we treat chronic pain by changing diagnose and manage show getting better ideas about medicine and conventional wisdom and how a lot of it is changing and fast and Guy rise and you're listening to the Ted Radio Hour from NPR the to table in just a quick thanks to two of our sponsors who help make this podcast possible first to Wells Fargo imagine what you can do with the right business credit from expanding your business to increasing your inventory and buy new equipment Wells Fargo works can help you achieve financial success for your business discover online tools and resources to help your business thrive at Wells Fargo work stuck on Wells Fargo together will go far member FDIC equal Housing lender thanks also to hear Nero year's first ever ground up hybrid crossover like all key models hero comes in an industry leading ten Year hundred thousand mile warranty program which is a testament to its outstanding quality and reliability discover the new technologically advanced Key and Nero smarter kind of crossover all warranties roadside assistance are limited retailer for details or go to Ikea cause it's the Ted Radio Hour from NPR and I rise and show to date getting better ideas about medicine and conventional wisdom and hell lot of it is changing and fast and we're just hearing from Doctor Elliot Crane who's at Stanford but the challenges of treating chronic pain and one of the challenges he says is making sure that doctors understand it much better than they do today getting the medical profession to think about chronic pain to understand chronic pain is a big task it's going to be a generational task the problem is that it's still a minority of medical schools in this country who have incorporated paying into the curriculum that's the real problem for not teaching people about pain they certainly have cancer and heart disease or diabetes as their curriculum but pain there's more patience in this country who have chronic pain that have cancer and diabetes and heart disease put together an incredible pace Gee think that in in fifty years or a hundred years from now we look back on how chronic pain was diagnosed and just surf think that we were doing it wrong well I don't think will think we were doing it wrong but we're going to be doing it very very differently pain is today kind of like I think what cancer was like sixty or seventy years ago cancer is not one disease it's a thousand different diseases that have certain things in common and I think pain is going to be seen is this same kind of a thing we talk about pain isn't that one entity but it's not one entity there's a thousand different kinds of pain unfortunately we only have one or two or three classes of medications that we can use against it if you go back to cancer in the nineteen fifties there only one or two or three drugs and they were very primitive trucks that could be used against cancer and it worked some of the time but most of the time it didn't Gee think will eventually get to a point where what is now being mis diagnosed or maybe not properly diagnosed whether that will actually change I'm a total optimist I think sooner or later people will figure out why some people spring their ankles and develop lifelong disabling chronic pain and we'll figure out why people don't and then once we understand the biology it's only then a matter of time before we can develop new drugs to interrupt that process and prevent him from happening now that's not going to be in my lifetime for sure but it's important that we invest in it the NIH budget for pain research is bashing the small We spent about ten times more money on Halloween candy and we spend on pain research as soon as the society makes up its mind that this is as important has cancer then I think we stand a chance of solving the problem the L A crane is a doctor and professor at Stanford University Medical Center you can see his entire talk at Ted that count so sometimes getting better results in medicine isn't just about developing new technology or drugs sometimes getting better results is about looking at patients in a different way yes in fact this is Dorothy Roberts professor of African Studies and Law and sociology at the University of Pennsylvania gg about fifteen years ago Dorothy had experience when she was pregnant with her fourth child I was a forty four years old when I had them am I was considered to be high risk high maternal age so her doctor had her sign up for a clinical trial that involved genetic test and was the first question she was asked was about her race they just asked me to check the box and my question is why use Rafe in other words why use race when it doesn't tell us anything about our genes here's Dorothy Roberts on the Ted stage well doctors tell me they're using race as a shortcut it's a crude but convenient proxy for more important factors like muscle mass enzyme level genetic traits they just don't have time to look for racism bad proxy in many cases race at said no relevant information at all it's just a distraction race medicine awful leaves patients of color especially vulnerable to harmful biases and stereotypes and if you find race specific medicine surprising wait till you learn that many doctors in the United States still use an updated version of a diagnostic tool that was developed by a physician during the slavery era a diagnostic tool that is tightly linked to justifications for slavery Doctor Samuel Cartwright practiced in the Deep South before the Civil War and he was a well known expert on what was then called The Crow medicine he promoted the racial concept of disease that people of different races suffer from different diseases and experience common diseases different my car cried argued in the eighteen fifties that slavery was beneficial for black people for medical reasons he claimed that because black people have lower lung capacity than whites forced labor was good for them he wrote in the medical journal it is the red vital blood sent to the brain that liberate their minds when under the white man's control and it is the want of sufficiency of red five a plot that changed their minds to ignorance and barbarism when freedom to support this theory Cartwright help to perfect a medical device for measuring breathing call this barometer to show the presumed efficiency and black people's loss today doctors still uphold the hard right's claim that black people as a race have lower lung capacity than white people some even use a modern day spa or Ahmed or that actually has a button labeled race so the machine adjust the measurements for each patient according to his or her race it's a well known function call correcting for race he wow that's crazy said to the stool this parameter which he used in a time of slavery version of it is still being used by some doctors today absolutely and in fact part of the argument now for paying attention to race is because of this long legacy of discriminating against black patients there's this racial concept of disease that comes out of slavery that people of different races have peculiar diseases that sort of belong to that race ok so where has this lettuce I mean like what are some of the modern consequences making assumptions and make the diagnosis using race well one example that comes out of the medical literature is the true case of a little African American girl who had persistent respiratory problems and you can look at her file and see two year old African American girl back in emergency room for respiratory problems four year old African American girl with another pneumonia and then when she was eight years old radiologist looked at the x ray of her chest without knowing arrays and said who's the kid with cystic fibrosis now if she had been white the doctors would have diagnosed or right away is the there was a baby kitty as having cystic fibrosis and treated accordingly it is that because statistically speaking white people are much more likely to have cystic fibrosis yes that's true so because she was black they assume she couldn't have cystic fibrosis even though she had the thought of the cystic fibrosis I wonder about some examples of that we hear leaked a sex right happens to affect people of European Jewish ancestor that sickle cell anemia affects people from North Africa or the Mediterranean so what would be a better way to start to think about those things well for one thing and just in the ask the question and you slipped from a relatively small group that was not a racial group B mentioned Ashkenazi Jews and then you also put together North Africa and the Mediterranean just shook Grove so one better way would be to do away with these large social groupings and consider people's actual ancestry and how ancestry is related to disease and things like geography or or lifestyle those would be more relevant well that's the basic reason why we find that certain races have a higher propensity to a particular disease because the disease very often is some consequences of a genetic mutation that was advantageous in that particular part of the world and so linking the disease to race is a very crude way of thinking about how certain populations evolve to the predisposed to certain diseases or resistant to certain diseases the problem with race Madison extend far beyond mis diagnosing patients its focus on innate racial differences in disease diverts attention and resources from the social determinants that cars hauling racial gaps in health lack of access to high quality medical care food deserts in poor neighborhoods exposure to environmental toxins high rates of incarceration and experiencing the stress of racial discrimination he seemed race is not a biological category that naturally produces these health disparities because of genetic difference race is a social category that has staggering biological consequences but because of the impact of social inequality on people's health so does race ever help a doctor in diagnosing the condition I don't think it does I think that race is always standing in for something else and it would always be better for that doctor to learn that something else so it instead of using race as a proxy for diet ask the patient what the patient's diet is instead of using race as a proxy for genetic difference either do a genetic test or ask about the patient's family history so why isn't this happening why is race still being used why I think doctors most anyway going to the profession to help heal people I know but I think that race is such a powerful concert it's the kind of delusion that's reinforced by so many aspects of a society and so they really have to think about patients outside of the biological concept of race the fact that it is constructed means we can construct something else and I believe human beings are capable of that the store he Roberts a professor at the University of Pennsylvania you can hear her entire talk at Ted dot com so if Dorothy Roberts argues that race is a bad proxy for trying to figure out how to diagnose a patient what about sex more and more there is the realization that there are certain disorders that are expressed differently in women this is Doctor Paula Johnson a cardiologist by training and I'm president of Wellesley College and Paula says there's a very simple reason why and women don't always experience diseases the same way we are different down to the cellular level because of that basic biological difference our cells and then our organs are different so if you're not really thinking about the fact that these sex differences occur you might miss the disease and this problem actually starts with clinical studies because up until the nineteen nineties many of them didn't include women and even today a lot of studies that include both men and women don't look at the differences between them and in a way if you have women and men in the study and then you give an average as the result that's really not good for women or men quite frankly because it doesn't give the right answer for for either of them and the wrong answer or no answer at all can be devastating here's Paula Johnson on the Ted stage some of my most wonderful memories of childhood are of spending time with my grandmother she loved life and although she worked in a factory she saved her pennies and she traveled to Europe I remember pouring over those pictures with her and dancing with her her favorite music and then when I was eight and she was sixty something changed she no longer worked or traveled she no longer dance my mother missed work and took her to doctors who couldn't make a diagnosis and my father would spend every afternoon with her just to make sure she ate but time of diagnosis is made she was in a deep spiral now many of you will recognize her symptoms my grandmother had depression today we know that women are seventy percent more likely to experience depression over their lifetimes compared with men and even with this high prevalence women are mis diagnosed between thirty and fifty percent of the time now we know
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