Ep 132 Osteogenesis Imperfecta: All bones about it

The TPWKY book club is back in action, and we’re thrilled to be starting this season’s reading journey with Dr. Deirdre Cooper Owens, reproductive rights advocate, Associate Professor in the University of Connecticut history department, and award-winning author of Medical Bondage: Race, Gender, and the Origins of American Gynecology. The history of science and medicine often focuses on the achievements of wealthy, white male physicians and researchers whose names are etched on medical school buildings, libraries, and dormitories. Rarely do these stories give voice to those whose bodies or labor were exploited in the name of scientific progress. In the first book club episode of the season, Dr. Deirdre Cooper Owens joins us to discuss the Black enslaved women who worked alongside the so-called “Father of Gynecology”, James Marion Sims, as both patients and caregivers in nineteenth-century America. Our conversation takes us through the inherent contradictions in the way nineteenth-century physicians wrote and thought about race, gender, and health, and how broad changes in medical practice during this time promoted the dissemination of unfounded beliefs in how white and Black bodies experienced pain, health, and disease. Tune in for a fascinating conversation that will have you immediately adding Medical Bondage to your to-read list! Learn more about your ad choices. Visit megaphone.fm/adchoices

In many ways, this week’s episode on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a companion piece to last week’s episode on Long Covid. The two share many similarities: a wide range of debilitating symptoms lingering long after infection, an illness which can transform from day to day or week to week, dismissal and downplaying by the medical community, a big question mark under “pathophysiological cause”, and so many others. These parallels can tell us a great deal about our concepts of disease and how we deal with uncertainty in science and medicine. But the differences between these two can be equally revealing. In this episode, we dig into what we know and what we hypothesize about the biological underpinnings of ME/CFS before tracing the twisty history of this disease, as popular perception switched back and forth and back again from “real” to “imagined” disease. We wrap up the episode with a look at some of the current research and promising treatments for ME/CFS. Both ME/CFS and Long Covid demonstrate the power of patients and patient advocates in raising awareness about poorly understood diseases and the impact that sharing personal stories can have. You can find more incredible work by Katie Walters, the provider of one of our firsthands for this episode, by clicking on this link. Learn more about your ad choices. Visit megaphone.fm/adchoices

We’re back with our season 7 premiere, and we’re kicking things off with a topic that we’ve wanted to cover for a long time, even if the topic itself hasn’t been around all that long. That’s right, we’re taking on Long Covid. When SARS-CoV-2 began making its way around the world in 2020, it was thought to cause a mild illness in most people, with complete recovery a couple of weeks after first getting infected. But just a short time into the pandemic, people began to report debilitating symptoms lingering for months after recovery was “supposed” to happen. What started out as a trickle of reports soon turned into a tsunami, and this condition, which came to be known as Long Covid, transformed our understanding of this viral infection. In this episode, we explore how the concept of Long Covid was defined by those who experience it, who also continue to advocate for better treatment, more research, and real compassion from medical professionals. We examine what we currently know about the biology of this condition, and delve into some of the most promising research avenues that may give us a greater understanding of or ability to treat Long Covid. This story is still being written, but already it can tell us so much about our concepts of infectious disease and how the medical system treats those with “invisible” illness. Learn more about your ad choices. Visit megaphone.fm/adchoices

For our season 6 finale, we’re spending some time with menopause. How many nicknames can you think of for menstruation? Quite a few, I’m sure. “That time of the month”, “Aunt Flo”, “the red wave”, “period”, the list goes on. But what about euphemisms for menopause? We’ve got “the change” or “change of life”, “climacteric”, and… that’s it? There may be more out there, but the comparison is revealing. Despite the fact that roughly half of the global population has or will one day experience menopause, the lack of nicknames demonstrates the silence, often tinged with shame, still enveloping it. In this episode, we explore the roots of this silence and the many historical misconceptions about menopause that frame our current perspective. We also examine the effect that this silence has on our understanding of the physiological processes underlying this transition. Why do some people experience symptoms and others do not? Why do humans experience menopause? What is the grandmother effect? What’s the latest on hormone replacement therapy? These are only a sampling of the many questions we delve into in this info-packed, frustration-laden, and eye-opening episode. Learn more about your ad choices. Visit megaphone.fm/adchoices

Raise your hand if you or someone you know has had their tonsils removed. If your hand is sky-high, there’s a pretty good chance that you (or that person you know) are from the US and were born before 1980. Of course, maybe that’s not the case, but tonsillectomies certainly fit in the category of 20th-century fads, along with Tamagotchis and the Atkins diet. While the procedure is still widely performed today (and for very good reasons), the frequency of tonsillectomies has dropped drastically from mid-20th century rates. In this episode, we explore why tonsillectomies became so popular, when they fell out of favor, and what about tonsils makes them worthy of removal. Tune in to be horrified by ancient tonsil removal techniques, shocked at how long it takes new knowledge to change policies, and appreciative of just how cool tonsils actually are. Learn more about your ad choices. Visit megaphone.fm/adchoices

This one’s not just for the dogs. It’s also for the cats, the raccoons, the wax moths, the birds, the mice, and so many other critters. Oh, and of course the humans. Even though most of us may be familiar with parvovirus through our canine friends, the world of parvoviruses is much larger. In this episode, we explore that world, focusing first on the biology of these tiny DNA viruses and how they make us sick before tracing the history of their discovery and the pandemic spread of canine parvovirus just a few short decades ago. We are joined by the amazing Dr. Steph Horgan Smith who acts as our veterinary tour guide through the animal world of these viruses and why vaccination against them is so incredibly important. Finally, we round out the episode with some of the latest research on these viruses, featuring some very cool, very promising work on using the dependoparvoviruses as a tool for gene therapy. Tune in to learn where Fifth disease got its name, what role raccoons may have played in the emergence of canine parvovirus, and so much more. Learn more about your ad choices. Visit megaphone.fm/adchoices

Often, the more we learn about a disease, the more we learn about ourselves and the world around us. The story of the genetic disorder osteogenesis imperfecta (OI), colloquially known as brittle bone disease, illustrates this perfectly. As researchers continue to uncover the mechanisms responsible for OI development and progression, the better we understand the varied and crucial roles collagen plays in all parts of our biology. As historians attempt to trace how that knowledge has accumulated over time, the more we can clearly see how science rarely progresses consistently but rather erratically and is prone to interruption. And as we assess where we are with OI treatment and research today, the more apparent the gap is between knowledge and application, and just how critical lived experiences are in understanding a disease. In this episode, we explore these aspects of osteogenesis imperfecta, and we are thrilled to be joined by Natalie Lloyd, who shares her experience with OI as our firsthand account. Natalie is a New York Times bestselling author of novels for young readers, whose recently published award-winning book Hummingbird tells the story of a young girl with OI. Heartwarming, magical, and brilliant, this wonderful book is a must-read. Tune in today! Learn more about your ad choices. Visit megaphone.fm/adchoices

Parkinson’s is a disease of many dimensions. On the shelves of any bookstore or library you’ll find at least a handful of titles exploring the topic from a myriad of perspectives, and extending that search to the internet will turn up dozens upon dozens more options: how-to guides for the recently diagnosed, in-depth textbooks exploring the neurophysiology of disease development, memoirs about caregiving for people with Parkinson’s, books offering a tour through the history of research advancements. The choices seem limitless and maybe a tad overwhelming. But that’s where we come in. In this episode, we take you through many of the dimensions of Parkinson’s disease, from its complicated biology, still shrouded in mystery, to its history, peppered with transformative moments like the introduction of dopamine. We round out the episode by exploring the tremendous amount of promising research on the horizon, leaving us feeling like we’re *this* close to yet another revolution in Parkinson’s disease treatment. If you’ve ever wondered what dopamine does, who Parkinson was, and what might be next for this disease, this episode is for you. Learn more about your ad choices. Visit megaphone.fm/adchoices

In the 16th century, a series of deadly epidemics swept through much of the region of Mesoamerica known as the Aztec Empire, killing untold millions. By the start of the first of these epidemics, the area had become woefully accustomed to devasting epidemic disease, as the Spanish conquistadors had introduced smallpox, measles, typhus, and influenza, among other infections. But this disease, with its tendency to induce massive hemorrhage, fever, jaundice, and rapid death, seemed different from those now familiar infections, and so was given a new name: cocoliztli. People watched in horror as cocoliztli overtook town after town, village after village, sometimes killing as much as 80% of the population and leaving nothing but desolation in its wake. Hundreds of years after the epidemics ended, debate about the pathogen responsible for cocoliztli remains. In this episode, we’re going deep down the rabbit hole of this medical mystery, linking the spread and nature of these epidemics with the characteristics of the many pathogens that have been proposed over the years. We draw from contemporary accounts, ecological analyses, and even a recent ancient DNA study to make our evaluations, but do we ever get to the bottom of cocoliztli? Tune in to find out. Learn more about your ad choices. Visit megaphone.fm/adchoices

With a history extending back millennia, with a biology that leads to permanent disability for tens of millions of people globally, and with a bacterial endosymbiont that may prove to be its Achilles heel, the filarial parasites that cause lymphatic filariasis are quite the complex creatures. In this episode, we explore the intricacies of this neglected tropical disease - also known as elephantiasis. We start by examining its complicated ecology involving many mosquito and parasite species, before moving on to its tricky biology where we finally answer the age-old question, “What is the lymphatic system anyway?”. Next, we move on to the convoluted history of lymphatic filariasis, where it holds the distinction of being the first disease recognized as mosquito-borne. We wrap up the episode with a look at its present global status, grappling with some current figures on the tremendous global burden of this disease and investigating some exciting treatment developments that will hopefully bring relief to the hundreds of millions of people at risk of developing this debilitating disease. Learn more about your ad choices. Visit megaphone.fm/adchoices