Shows
History For Sleep with the Drowsy HistorianThe HORRIFYING Life of a Medieval Peasant With Stone Man Disease | History For SleepGet early episodes & bonus perks on Patreon: https://patreon.com/DrowsyHistorianYou are a medieval English peasant — poor, tired, and already halfway broken by life. And now your body has decided to finish the job. One limb at a time. Without warning. Without mercy. You’re not cursed. You’re not possessed. You’ve just been born with one of the rarest, cruelest medical conditions in human history: Stone Man Disease.This immersive, second-person bedtime documentary walks you through the terrifyingly slow progression of fibrodysplasia ossificans progressiva in a time before diagnosis, compassion, or indoor p...2025-06-222h 01
Rare Disease DiscussionsConsider Rare: Suspecting and Diagnosing Fibrodysplasia Ossificans Progressiva (FOP)Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare genetic disorder characterized by abnormal bone development. Most babies with FOP appear normal and healthy at birth with one exception—the appearance of deformed big toes. Unfortunately, this common deformity can be attributed to other causes. This can result in a delay of years before a person is diagnosed with FOP properly. This educational webinar, hosted by Ellen Elias, MD, Professor, Pediatrics and Genetics, University of Colorado School of Medicine, and Christiaan Scott, MD, Professor of Medicine at the University of Ottawa, examines best practices to suspect and diagnose this ultra-rare condition.2025-05-0552 min
PraimeriTop 10 Unsolved Medical Illnesses of the worldMedicine has come a long way, curing diseases that once seemed unbeatable and extending lifespans like never before. But for all our advancements, there are still mysteries lurking in the human body—illnesses so baffling, so elusive, that they continue to stump even the brightest minds in science and medicine. In this episode, we’re counting down the Top 10 Unsolved Medical Illnesses of the World , exploring the stories behind these enigmatic conditions, the patients who live with them, and the scientists racing against time to find answers.From Chronic Fatigue Syndrome (ME/CFS) —a debilitating illness that l...2025-02-0708 min
Die Einsteiger – dein Reise und Vanlife PodcastEP029: Der Bus als Freiheitsmobil: Wie Valentin Bunjaku ein grosses Stück Freiheit gewonnen hat.Ein erwachsener Mensch hat rund 206 Knochen. "Ich habe meine Knochen nie zählen lassen", lacht Valentin Bunjaku, der mit Sicherheit ein paar mehr hat als wir. Denn er hat die sehr seltene Genkrankheit FOP (Fibrodysplasia Ossificans Progressiva), welche im Körper zusätzliche Knochen bildet, die ihn in seiner Bewegungsfreiheit einschränken. Somit benötigt der 23-jährige im Alltag einen Rollstuhl. Seit einem halben Jahr hat Valentin nun ein eigenes Auto, welches seinem Leben sehr viel mehr Freiheit gibt, als er selbst erwartet hat. Und: Er will daraus sogar einen einfacher Camper machen.
Mehr übers Thema Inklusio...2025-01-1442 min
Divine Dialogue with Jamie and Jamey2.14 Medical MysteriesThis podcast episode explores medical mysteries that continue to puzzle scientists. It examines cases of spontaneous remission where diseases like cancer disappear without explanation, and conditions like Fibrodysplasia Ossificans Progressiva (FOP), where the body turns muscle into bone. The episode also looks at Morgellons disease, characterized by skin lesions and fibers, and the debate over whether it's a physical or psychological condition. It also discusses the placebo effect, where belief in a treatment leads to real healing, and autoimmune diseases, where the body's immune system attacks itself. Finally, the episode covers Alien Hand Syndrome, a disorder where a hand...2024-11-1614 min
DDxUnexpected Therapies for Fibrodysplasia Ossificans Progressiva Offer New HopeA local pool in the summer is teeming with kids. A 9-year-old does a cannonball into the shallow end. As she surfaces, a stab of pain shoots through her hip. As days pass, what seems like a straightforward bump takes a complicated turn. Dr. Edward Hsiao, an endocrinologist and Director of the UCSF Metabolic Bone Clinic at the University of California, describes how after discovering a new bone growth at the site of the pain and several rounds of major (and unsuccessful) interventions, the child is diagnosed with fibrodysplasia ossificans progressiva. This extremely rare bone disorder has a devastating...2024-05-1510 min
Endocrine News PodcastENP84: Fibrodysplasia Ossificans Progressiva2024-04-2622 min
Reading With Your Kids PodcastHow Fantasy and Realism Can Educate and Inspire Young ReadersRajani LaRocca, Shannon Hitchcock and Amie Darnell Specht are on this episode of #ReadingWithYourKids to celebrate the power of story. We begin the episode by welcoming Rajani LaRocca back to the show. She is celebrating her new middle grade fantasy novel, Sona and the Golden Beasts. Rajani explained the setting and characters, including Sona who discovers an injured wolf pup and goes on a quest to save her mentor. Jedlie asked Rajani about her writing process. She said she started with the emotions of indignation and affection for marginalized people. They discussed how media has agendas and...2024-04-2655 min
Grab The Vivid Full Audiobook Now, Busy Professionals!Dancing in the Storm by Shannon Hitchcock, Amie Darnell SpechtPlease visithttps://thebookvoice.com/podcasts/1/audiobook/685394to listen full audiobooks.
Title: Dancing in the Storm
Author: Shannon Hitchcock, Amie Darnell Specht
Narrator: Cassandra Morris
Format: Unabridged Audiobook
Length: 3 hours 48 minutes
Release date: February 6, 2024
Genres: Non-fiction
Publisher's Summary:
In the tradition of Out of My Mind and Rules, and inspired by the co-author’s own life, this is a heartfelt, candid, and illuminating story of a girl learning to live fully with a rare genetic disorder. Kate’s life in Baton Rouge, full of friends and family, gymnastics and Girl Scouts, is just plain great. But then, at the age of twel...2024-02-063h 48Listen to Best Full Audiobooks in Kids, Non-fictionDancing in the Storm by Shannon Hitchcock, Amie Darnell SpechtPlease visithttps://thebookvoice.com/podcasts/1/audiobook/685394to listen full audiobooks.
Title: Dancing in the Storm
Author: Shannon Hitchcock, Amie Darnell Specht
Narrator: Cassandra Morris
Format: Unabridged Audiobook
Length: 3 hours 48 minutes
Release date: February 6, 2024
Genres: Non-fiction
Publisher's Summary:
In the tradition of Out of My Mind and Rules, and inspired by the co-author’s own life, this is a heartfelt, candid, and illuminating story of a girl learning to live fully with a rare genetic disorder. Kate’s life in Baton Rouge, full of friends and family, gymnastics and Girl Scouts, is just plain great. But then, at the age of twel...2024-02-063h 48
Explore New Worlds, Free Audiobook Are the Golden PearlsDancing in the Storm Audiobook by Amie Darnell SpechtListen to this audiobook in full for free onhttps://hotaudiobook.com/freeID: 685394
Title: Dancing in the Storm
Author: Amie Darnell Specht, Shannon Hitchcock
Narrator: Cassandra Morris
Format: Unabridged
Length: 3:48:24
Language: English
Release date: 02-06-24
Publisher: Listening Library (Audio)
Genres: Kids, General, Health & Family
Summary:
In the tradition of Out of My Mind and Rules, and inspired by the co-author’s own life, this is a heartfelt, candid, and illuminating story of a girl learning to live fully with a rare genetic disorder.
Kate’s life in Baton Rouge, full of friends and family, gymnastics and Girl Scouts, is just plai...2024-02-063h 48
Funk i P1Birgitta har stelnat som en skyltdocka – specialbyggda rullatorn gjorde rörelse möjligt: Den betyder livetBirgitta Strandberg, 68, kämpar med en sällsynt sjukdom där hennes kropp stelnar i ett extra skelett. Men hon är i konstant rörelse, tack vare sin specialbyggda rullator. Lyssna på alla avsnitt i Sveriges Radio Play. En transkriberad version av avsnittet finns under artikeln.Fjärde avsnittet i serien ”Hjälpmedlet som ändrade allt”, om personer som lever med en skada eller en sjukdom, och om upptäckterna som förbättrade deras liv.I Liatorp, Småland, lyfts 68-åriga Birgitta Strandberg från sin specialbyggda stårullator, till sin specialbygg...2024-01-2010 min
Multispective041 From Muscles to Bones: An Unstoppable Genetic DisorderSend us a textIn this episode, we explore the story of Joe Sooch, who shares his heartbreaking story of living with a rare condition called "Fibrodysplasia Ossificans Progressiva" (FOP), where the body’s muscles slowly and progressively turn into bones. In contrast to our previous episodes this time it's impossible to overcome this condition but still Joe offers a glimpse into his extraordinary life, showcasing unwavering strength in the face of adversity. We delve deep into this story from what it means medically, all the complications that come with FOP, and his general view on life; hi...2024-01-151h 01
COR2ED - Rare Diseases Medical ConversationRare bone disease: Highlights from ASBMR 2022 - Part 2In this second episode of a three-episode podcast series, COR2ED and ASBMR have partnered with Professor Eric Rush (Children’s Mercy Hospital) to provide rare bone disease highlights from ASBMR 2022 Annual Meeting.
Prof. Rush opens with detailed information on fibrodysplasia ossificans progressiva (FOP): symptoms of this severe congenital condition include permanent heterotopic ossifications preceded by painful soft tissue swelling. Nearly all patients have the same ACVR1 receptor variant, and Prof. Rush shares therapy options for the disease. He then offers insights on hypochondroplasia (HCH), a developmental disorder caused by a defect in the FGFR3 gene. An an...2023-12-0615 min
PeerView Clinical Pharmacology CME/CNE/CPE VideoRichard Keen, PhD, FRCP, Edna E. Mancilla, MD - Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaThis content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME information, and to apply for credit, please visit us at PeerView.com/NYY865. CME credit will be available until August 30, 2024.Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaIn support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and International Fibrodysplasia Ossificans Progressiva Association ,Progressive Osseous...2023-09-211h 04
PeerView Endocrinology & Diabetes CME/CNE/CPE Video PodcastRichard Keen, PhD, FRCP, Edna E. Mancilla, MD - Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaThis content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME information, and to apply for credit, please visit us at PeerView.com/NYY865. CME credit will be available until August 30, 2024.Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaIn support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and International Fibrodysplasia Ossificans Progressiva Association ,Progressive Osseous...2023-09-211h 04
PeerView Clinical Pharmacology CME/CNE/CPE Audio PodcastRichard Keen, PhD, FRCP, Edna E. Mancilla, MD - Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaThis content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME information, and to apply for credit, please visit us at PeerView.com/NYY865. CME credit will be available until August 30, 2024.Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaIn support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and International Fibrodysplasia Ossificans Progressiva Association ,Progressive Osseous...2023-09-211h 04
PeerView Family Medicine & General Practice CME/CNE/CPE Audio PodcastRichard Keen, PhD, FRCP, Edna E. Mancilla, MD - Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaThis content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME information, and to apply for credit, please visit us at PeerView.com/NYY865. CME credit will be available until August 30, 2024.Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaIn support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and International Fibrodysplasia Ossificans Progressiva Association ,Progressive Osseous...2023-09-211h 04
PeerView Oncology & Hematology CME/CNE/CPE Video PodcastRichard Keen, PhD, FRCP, Edna E. Mancilla, MD - Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaThis content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME information, and to apply for credit, please visit us at PeerView.com/NYY865. CME credit will be available until August 30, 2024.Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaIn support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and International Fibrodysplasia Ossificans Progressiva Association ,Progressive Osseous...2023-09-211h 04
PeerView Oncology & Hematology CME/CNE/CPE Audio PodcastRichard Keen, PhD, FRCP, Edna E. Mancilla, MD - Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaThis content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME information, and to apply for credit, please visit us at PeerView.com/NYY865. CME credit will be available until August 30, 2024.Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaIn support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and International Fibrodysplasia Ossificans Progressiva Association ,Progressive Osseous...2023-09-211h 04
PeerView Family Medicine & General Practice CME/CNE/CPE Video PodcastRichard Keen, PhD, FRCP, Edna E. Mancilla, MD - Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaThis content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME information, and to apply for credit, please visit us at PeerView.com/NYY865. CME credit will be available until August 30, 2024.Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaIn support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and International Fibrodysplasia Ossificans Progressiva Association ,Progressive Osseous...2023-09-211h 04
PeerView Endocrinology & Diabetes CME/CNE/CPE Audio PodcastRichard Keen, PhD, FRCP, Edna E. Mancilla, MD - Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaThis content has been developed for healthcare professionals only. Patients who seek health information should consult with their physician or relevant patient advocacy groups.For the full presentation, downloadable Practice Aids, slides, and complete CME information, and to apply for credit, please visit us at PeerView.com/NYY865. CME credit will be available until August 30, 2024.Can YOU Avoid Iatrogenic Harm? Understanding and Identifying Fibrodysplasia Ossificans ProgressivaIn support of improving patient care, this activity has been planned and implemented by PVI, PeerView Institute for Medical Education, and International Fibrodysplasia Ossificans Progressiva Association ,Progressive Osseous...2023-09-211h 04
FIECON Patient PerspectivesThe patient journey | FOP (Fibrodysplasia Ossificans Progressiva ), Lexi's storyIn this podcast, David Robins talks to Lauren Weinberg, Senior Associate at FIECON, about the patient journey, his experience as the father of Lexi who lives with Fibrodysplasia Ossificans Progressiva (FOP), and as a family after the FOP diagnosis.
FOP is an ultra-rare genetic condition and is one of the most debilitating conditions known to medicine. FOP causes the soft connective tissue of the body to turn into new bone. When that occurs over or near joints, or within a muscle, it restricts the person’s movements. This new bone, or ossification, can mean that the sufferer is e...2023-08-3029 min
MPR Weekly DoseMPR Weekly Dose 170 — Warning Alert for Tests; Arexy Available for Older Adults; Sohonos and Hezato Kit Approved; Statement on GLP-1 Use Before EndoscopyFDA issue recommendations to avoid Company's tests; RSV vaccine now available for older adults; New treatments approved for fibrodysplasia ossificans progressiva and for those with metastatic uveal melanoma with unresectable hepatic metastases; and gastrointestinal associations issue a statement regarding GLP-1 use prior to upper gastrointestinal endoscopy.2023-08-1815 min
Allen YoungIncurable diseases that Robocentric Medical Biotech aims to curehttps://youtu.be/ezKNJ5_Sgdc
Modern medicine is pathetic. There are too many diseases, disabilities, and damages in the human body that the modern medicine cannot cure.
I absolutely hate and despise the inability of the modern medicine to cure so many diseases, disabilities, and damages in the human body. I am disgusted by the inabilities and shortcomings of the modern medicine. That is why I pursue advancing medical biotech for curing all the diseases, disabilities, and damages in the human body: I aim to realize the literal panacea via advancing medical biotech, according to my plan in my book...2023-06-2417 min
Coward's Fury: A True Crime PodcastCoward's Fury: A Fury Within 8 - Eleven Hardly Heard OfSend us a Text Message.Welcome to another short but not so sweet Fury Within! Just Chris along with pod dog to talk you through eleven human diseases that you may never have heard of like Auto-Brewery Syndrome or Human Werewolf Syndrome. Chris will briefly walk you through what each one is, potential causes and symptoms. It's a little scary what our own bodies can do to us. Please share us with your friends, we are always looking to have more ourselves. Email us at cowardsfury@gmail.comLike us or give u...2023-06-2320 min
Tæt påTæt på - Julie Christensen - Fibrodysplasia Ossificans ProgressivaHej, mit navn er Julie, jeg er 27 år gammel og jeg lider af den sjældne bindevævssygdom Fibrodysplasia Ossificans Progressiva, der gennem min barn- og ungdom har frataget mig mere og mere af min bevægelighed idet den har omdannet flere af mine muskler og led til kalk og derved har givet mig et ekstra skelet. I dette afsnit skal i høre om, hvordan det har været at gå fra en helt almindelig barndom til gradvist at blive frataget mere og mere bevægelighed frem til i dag, hvor jeg kun kan bruge...2023-06-131h 24
SERIOUSLY STRANGE | Hosted by Rob Gavagan10 Horrible Birth Defects + 10 Disturbing Facts About The Human Body►10 Horrible Birth Defects | TT #17Giving birth to a healthy baby is one of the biggest hopes in a new parent's life. however, the thing about hope is that it's subject to tragedy. In this episode, Cayleigh Elise joins Rob in discussing ten horrible birth defects. 10. CYCLOPIA9. SIRENOMELIA8. FIBRODYSPLASIA OSSIFICANS PROGRESSIVA7. ANENCEPHALY6. CRANIOPAGUS PARASITICUS5. CONJOINED TWINS4. OSTEOGENESIS IMPERFECTA3. EPIDERMOLYSIS BULLOSA2. ECTOPIA CORDIS1. HARLEQUIN ICHTHYOSIS►5 Disturbing Facts About The Human Body | SS #84You may not look at your own body the same way again after this podcast!5. HANGRY4. LEAKA...2023-04-1924 min
NormyStounman. Jak se dá žít s vidinou smrti? Příběh o vztazích, humoru a videích na TikToku„Je to jedna z mála věcí, která tady po mně zůstane,“ říká o svém natáčení videí na TikTok Petr alias @stounman29. Vtipná videa ale začal točit taky proto, že chtěl lidem ukázat, jaký je život vozíčkářů a jak postupuje jeho nemoc Fibrodysplasia ossificans progressiva (FOP). Do češtiny se překládá jako nemoc zkamenělých lidí. V Česku žijí se stejnou diagnózou jen jednotky osob, ve světě jsou jich maximálně stovky.Všechny díly podcastu DokuVlna můžete pohodlně poslouchat v mobilní aplikaci mujRozhlas pro Android a iOS nebo na webu mu2023-01-2927 min
NormyStounman. Jak se dá žít s vidinou smrti? Příběh o vztazích, humoru a videích na TikToku„Je to jedna z mála věcí, která tady po mně zůstane,“ říká o svém natáčení videí na TikTok Petr alias @stounman29. Vtipná videa ale začal točit taky proto, že chtěl lidem ukázat, jaký je život vozíčkářů a jak postupuje jeho nemoc Fibrodysplasia ossificans progressiva (FOP). Do češtiny se překládá jako nemoc zkamenělých lidí. V Česku žijí se stejnou diagnózou jen jednotky osob, ve světě jsou jich maximálně stovky.Všechny díly podcastu Normy můžete pohodlně poslouchat v mobilní aplikaci mujRozhlas pro Android a iOS nebo na webu mu2022-12-1729 min
The See-Through PodcastJoe Sooch (Man Turning Into Stone)Episode 079 | Joe Sooch (YouTuber) joins the podcast! In this episode, Lance and Joe discuss the ultra rare disease Fibrodysplasia Ossificans Progressiva (FOP) that is causing Joe's muscles, tendons, and ligaments to turn into bones. They also discuss the "elite" mentality the drives Joe's YouTube channel, his struggles to find companionship as a disabled man, his mental health issues, and his "hot take" perspectives on the disability community. ------------------------- SUPPORT SEE-THROUGH: Merch: https://seethroughpod.com/merch Patreon: https://patreon.com/seethroughpod ------------------------- JOE SOOCH LINKS: YouTube...2022-12-111h 26
Just Say MaybeJoe: Living with FOP, Being on Special Books by Special Kids, and Changing Your Mindset for SuccessHi everyone! In this episode of the Just Say Maybe Podcast, I chatted with Joe Sooch,a fellow podcaster and Youtuber. Joe is diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), a rare disease that essentially turns his muscles into bones. In this conversation, Joe and I talk about our experiences being on Special Books by Special Kids, how he got into content creation, and changing your mindset for success. Update: Joe is now monetized on Youtube! Whoo! 0:00 - Intro 1:20 Experience of being on Special Books by Special Kids6:20 - Misconceptions of Joe becaus...2022-10-3150 min
COR2ED Medical EducationASBMR 2022 Rare Bone Disease Highlights: Episode 2In this second episode of a three-episode podcast series, COR2ED and ASBMR have partnered with Professor Eric Rush (Children’s Mercy Hospital) to provide rare bone disease highlights from ASBMR 2022 Annual Meeting.
Prof. Rush opens with detailed information on fibrodysplasia ossificans progressiva (FOP): symptoms of this severe congenital condition include permanent heterotopic ossifications preceded by painful soft tissue swelling. Nearly all patients have the same ACVR1 receptor variant, and Prof. Rush shares therapy options for the disease. He then offers insights on hypochondroplasia (HCH), a developmental disorder caused by a defect in the FGFR3 gene. An an...2022-09-1415 min
A Little WickedMedical OdditiesLexi talks about various rare medical diseases from Exploding Head Syndrome to hypertrichosis! Information to NORD rare disease advocacy can also be found listed below.https://my.clevelandclinic.org/health/diseases/21907-exploding-head-syndrome-ehs#:~:text=Exploding%20head%20syndrome%20(EHS)%20is%20a%20type%20of%20sleep%20disorder,wake%20up%20during%20the%20night.https://www.webmd.com/brain/what-is-synesthesiahttps://jnnp.bmj.com/content/75/1/13https://www.healthline.com/health/cotard-delusion#treatmenthttps://rarediseases.org/rare-diseases/fibrodysplasia-ossificans-progressiva/https://muttermuseum.org/exhibitions/harry-and-carolhttps://www.medicalnewstoday.com/articles/320048#managementhttps://rarediseases...2022-08-1835 min
PrecariousMan Turning Into Stone - My Conversation with Joe SoochJoe Sooch is 29 years old and has been living with Fibrodysplasia ossificans progressiva (FOP) is a very rare genetic connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present such as the ligaments, tendons, and skeletal muscles. He has lost 95% of his mobility and relies on others to help him with daily functions. But, talking to him, you wouldn't know it. He has a way of living with this disease that puts it in the background which is impressive given how this has physically shaped his life. And, this...2022-08-1150 min
PeerVoice Endocrinology & Metabolic Disorders VideoCatching a Break in Fibrodysplasia Ossificans Progressiva: Case-Based Approaches to Improve Diagnosis and ManagementCatching a Break in Fibrodysplasia Ossificans Progressiva: Case-Based Approaches to Improve Diagnosis and Management2022-08-1115 min
PeerVoice Clinical Pharmacology VideoCatching a Break in Fibrodysplasia Ossificans Progressiva: Case-Based Approaches to Improve Diagnosis and ManagementCatching a Break in Fibrodysplasia Ossificans Progressiva: Case-Based Approaches to Improve Diagnosis and Management2022-08-1115 min
The Sod's Law PodcastMan Turning to Stone w/ Joe SoochThis week I’m talking to Joe Sooch…
Joe is a podcaster and YouTuber who lives with an extremely rare genetic condition, called fibrodysplasia ossificans progressiva, or FOP, in which fibrous connective tissue such as muscle, tendons, and ligaments turn into bone tissue.
It’s progressive, meaning it gets worse over time, it’s the only known medical condition where one organ system changes into another and it’s so rare that only around 800 cases have been confirmed worldwide.
Joe is only 29, but he’s now at the point where most of his...2022-06-201h 13
Beyond Chronic Burnout: The Talk Show for Autistic Women & Their Helping Professionals084- Relationships & Rare Disease with Joe SoochHow would you choose to spend your time and who would you choose to spend your time with if you knew your time was ticking and your body was turning to solid bone?
Meet Joe Sooch who has a rare disease called FOP which is slowly turning his body to solid bone. Joe invests his time in elevating the voices of others who have disabilities and rare conditions too on his YouTube Channel, Two Mics, One Joe Sooch.
Joe and I talk relationships, how we view them differently as Neuro-Majority and NeuroDistinct brains, interabled relationships a...2022-05-1841 min
Curator's ChoiceEpisode 38: Mutter MuseumThis week we meet with Robert Hicks, the previous Director of the Mutter Museum in Philadelphia. The Museum contains a collection of anatomical and pathological specimens, wax models, and antique medical equipment, and is part of The College of Physicians of Philadelphia. Along with the many preserved specimens in the macabre repository, you can find the liver of conjoined twins Chang and Eng Bunker, a 40 lb colon, and anthropodermic books (or books bound in human skin).Robert shares with us the history of some radioactive artifacts used by Marie Curie, including the Piezoelectric Quartz Electrometer, which is...2022-04-2048 min
Two Disabled Dudes178 - Man Turning Into Stone - Joe SoochJoe Sooch points out that we only have one life to live so we better make the most of it. He has a rare disease called Fibrodysplasia ossificans progressiva (FOP) - a genetic disorder that causes soft tissues to transform permanently into bone. Joe uses a wheelchair and FOP has limited his physical abilities in many other ways. However he is determined to make the most of the time he's been given. Find Joe Sooch on YouTube or Instagram. Listen to Joe interview us on his podcast Two Mics, One Joe Sooch.2022-04-1146 min
MAL DE LA CABEZA BY RAFAEL BERISIO (ITALIA)Nº75 Mal de la Cabeza por Raffaele BerisioTRACK LIST
GUTTED - Fades Away (feat. Attila Vörös)(HUN)
DORMANT ORDEAL - Here Be Dragons (POL)
MONUMENTAL DISCHARGE - Mephitic Feculence (USA)
manifesting obscenity - Fierce Bloodshed (RUS)
Numbered With The Transgressors - Commencing The Mechanics Of Dismemberment (USA)
Smegma - Implosión Corporal (ARG)
Indoctrinated - Immolated Sculptures (CIL)
Fibrodysplasia Ossificans Progressiva - Mutilating the Deceiver (ITA)
Infected_Malignity - Revival (JPN)
En directo todos los martes a las 21:00 Horas Española
Programa original de CD Music Radio Rock&Metal
mail de contacto para el programa 📧ralph.berisio@gmail.com2022-02-1230 min
MedBitsThis Condition Turns Tissue Into BoneThanks for tuning in! Here are the sources from this episode of MedBits:https://medlineplus.gov/genetics/condition/fibrodysplasia-ossificans-progressiva/#causesCase Study: https://mss-ijmsr.com/fibrodysplasia-ossificans-progressiva-stoneman-syndrome-a-rare-skeletal-dysplasia/2021-11-2905 min
Roll With The PunchesEP246 The Boy Turning Into Stone | Joey SoochJoey is one of only 800-1000 humans to suffer the rare genetic disorder FOPsFibrodysplasia ossificans progressiva is a severe, disabling disorder with no current cure or treatment. It is the only known medical condition where one organ system changes into anotherA gene mutation affects the body's repair mechanism, causing fibrous tissue including muscle, tendons, and ligaments to become ossified, either spontaneously or when damaged as the result of trauma. Minor injuries can cause joints to become permanently fused as new bone forms, replacing the damaged muscle tissue. This new bone formation eventually forms a secondary skeleton...2021-11-161h 01
FIECON Patient PerspectivesThe patient journey | Fibrodysplasia Ossificans Progressiva (FOP)Chris and Helen Bedford - Gay are the founders and patient advocacy leaders at FOP Friends charity. In 2009 their first child, Oliver, was diagnosed with FOP, aged just one.FOP Friends’ aim is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects. In this podcast they talk to us about the patient journey and their experiences as both parents of a child with FOP and patient advocacy leaders.FOP is an ultra-rare disabling genetic condition and is one of the most disabling conditions known to me...2021-08-1226 min
R is for Rare24. Fibrodysplasia Ossificans Progressiva (FOP) ft. Joey Suchanek***TW: Joey very briefly discusses suicide in the second half of the episode. Nothing graphic, but it is brought up***
This week's interview is with Joey Suchanek (@joeysooch on Instagram), who is an aspiring influencer with a very rare, genetic disorder called FOP; FOP stands for Fibrodysplasia Ossificans Progressiva. FOP is a rare disease in which a person's muscles, tendons and ligaments turn into bone via flares. Joey and I discuss what makes the rare disease community unique, various ways to view beauty standards in social media, and much more!
Be sure to subscribe to R is for Rare on...2021-07-221h 12
Murder, Mirth, & Monsters PodcastEpisode 95: Interesting Medical Anomalies - Then the Fire Nation AttackedOn this episode, Brian teaches Emma about a some medical anomalies that have peaked his interest. Want to get in touch with us? For work related inquires and suggestions for the show: murdermirthmonsters@gmail.com Twitter: @MirthAndMurder Sources for this episode: https://en.wikipedia.org/wiki/Cotard_delusion https://en.wikipedia.org/wiki/Alien_hand_syndrome https://en.wikipedia.org/wiki/Alice_in_Wonderland_syndrome https://en.wikipedia.org/wiki/Kleine-Levin_syndrome https://en.wikipedia.org/wiki/Fibrodysplasia_ossificans_progressiva 2021-02-081h 03
PodcastDXFibrodysplasia Ossificans Progressiva
Kim Shields is 38 years old and just finished her masters in social work program. She was diagnosed with FOP at age 15, but it has mildly affected her throughout her life. She is a wheelchair user, but she doesn’t let that slow her down. She is working on a plan to open a nonprofit in the future to help with access issues for those with disabilities, specifically wheelchair access, but will fight to help anyone with a disability get access to housing, employment, and transportation that meets their individual needs to be as independent as possible.
...2021-02-0233 min
PodcastDXFibrodysplasia Ossificans Progressiva Kim Shields is 38 years old and just finished her masters in social work program. She was diagnosed with FOP at age 15, but it has mildly affected her throughout her life. She is a wheelchair user, but she doesn’t let that slow her down. She is working on a plan to open a nonprofit in the future to help with access issues for those with disabilities, specifically wheelchair access, but will fight to help anyone with a disability get access to housing, employment, and transportation that meets their individual needs to be as independent as possible. 2021-02-0233 min
The Valor Podcast1.5 TYSONTyson's story is unique.
Living with FOP (Fibrodysplasia ossificans progressiva), where the soft tissue in his body regenerates as hard tissue, his condition is so rare that there is zero government funding available to fund research for a cure.
Tyson shares his journey with FOP, detailing the challenges he has to endure. But Tyson has this incredible knack for shining a light on his situation and appreciating all of the opportunities that have come to him as a result.
A truly inspiring chat, I hope you all enjoy listening to Tyso's story.
To learn more about and to support FOP...2020-11-0834 min
Docs WatchEpisode 12: Bloodsucking RocksSUBJECTIVEIn this episode, we talk about the vampire's curse, vampire epidemics, and... rocks? Does the vampire legend have its roots in real life disease? Probably not, but we'll tell you about some interesting ones anyway! Ultimately, this ep came to be because we want to talk about a very specific scene in Twilight, but figured it would be good to provide some folkloric context first. Little did we know, all of the vampire research we did has little to nothing to do with the Cullens — oh well!OBJECTIVEResources, Citations, and Mentions:...2020-07-1700 min
The Sisters StrangeEpisode Twenty-Two: The Human Body is WeirdAfter some technical issues, Corey and Holly are back and better than ever! This week, Holly brings you the mysterious Dancing Plague of 1518 and Corey explores fibrodysplasia ossificans progressiva, or Stoneman disease.
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Ko-Fi2020-06-2639 min
KC Cares OnlineRare Diseases | KC Cares Episode 373Kansas City’s Nonprofit Voice! Sharing the stories of local nonprofits and connecting them with the community! We talk with philanthropists, volunteers, community activists, executive directors, and non-profit lovers from the Kansas City nonprofit community. Be seen, be heard with KC Cares! Kansas City’s Nonprofit Voice! On episode 373 of KC Cares, we talk with Michelle Davis, Executive Director with International Fibrodysplasia ossificans progressiva Association! Great discussion about rare diseases! Listen now! ••••••••••••••••••••••••••••••• International Fibrodysplasia ossificans progressiva Association | Sat Feb 15 2020 Michelle Davis, Executive Director and Kelly Ranallo, President with RareKC/Turner Syndrome Global Alliance The IFOPA is a 501c3 nonprof...2020-03-0416 min
The Ladies of StrangeRebecca's Fantastical Tour of the Mutter MuseumHello, Lovelies! Ever heard of the Mutter Museum? Well neither had Ashely or Tiffany and Rebecca was WAY to excited to inform them about this amazing museum. Thanks to Thomas Dent Mutter, this museum has everything from The Soap Lady, Harry Raymond Eastlack's skeleton that was afflicted with Fibrodysplasia Ossificans Progressiva (FOP), Dr. Joseph Hyrtl’s human skull collection, and a cast of siamese twins Chang and Eng. As always, Rebecca covers the history, the popular exhibits, and somethings you're not sure why they would even have.
Our drink break this week is brought to you by the...2019-03-1448 min
RARECastA Patient Group Crafts Guidelines for Working with PharmaPatient organizations have long been working with biopharmaceutical companies, but as they have grown more sophisticated about their interactions, they are coming to understand the value in laying out the ground rules for these relationships. Last year, the International Fibrodysplasia Ossificans Progressiva Association, or IFOPA, took the unusual step to craft a set of guidelines for the organization regarding how it engages with the pharmaceutical industry. It made these guidelines public and continues to refine them. We spoke to Betsy Bogard, chair of the IFOPA research committee, about why the organization created the guidelines, how they have affected interactions between...2017-08-3017 min
The One in a Million BabyEpisode 12: Ali and Angela - living with F.O.PAfter years of battling to find a diagnosis, Angela and her husband Gabe finally got one for their daughter Ali when she was five years old. Ali had Fibrodysplasia Ossificans Progressiva, and her body was slowing turning itself from muscle to bone. Now at nine and a half, Angela and Gabe are doing everything they can to keep their daughter mobile and enjoying her life as much as possible. This episode tells their story. 2016-09-0158 min
RARECastHow One Rare Disease Group Leverages Relationships with IndustryThe International Fibrodysplasia Ossificans Progressiva Association focuses on a rare genetic disorder, but it has had great success in stimulating research, engaging with industry, and helping advance needed therapies. We spoke to Betsy Bogard, global research development director for the IFOPA, about FOP, how her organization has helped drive work toward new treatments, and what it’s learned about how to best work with industry partners.2016-08-1718 min
Translational MedicineUnderstanding growth signalsGrowth hormones and cytokines regulate the key physiological processes of growth and differentiation as well as responses to injury and infection. FIBRODYSPLASIA OSSIFICANS PROGRESSIVA
Growth factors and signals are fundamental to many diseases. A single point mutation in the DNA coding for a bone morphogenetic protein is responsible for the development of FOP, a very debilitating disease where muscles are progressively turned into bones. Understanding these mechanisms allowed the selection of a drug, currently used to treat cancer, that may possibly be repurposed to treat FOP.2016-04-2806 minTranslational MedicineUnderstanding growth signalsGrowth hormones and cytokines regulate the key physiological processes of growth and differentiation as well as responses to injury and infection. FIBRODYSPLASIA OSSIFICANS PROGRESSIVA
Growth factors and signals are fundamental to many diseases. A single point mutation in the DNA coding for a bone morphogenetic protein is responsible for the development of FOP, a very debilitating disease where muscles are progressively turned into bones. Understanding these mechanisms allowed the selection of a drug, currently used to treat cancer, that may possibly be repurposed to treat FOP.2016-04-2806 minTranslational and ClinicalUnderstanding growth signalsGrowth hormones and cytokines regulate the key physiological processes of growth and differentiation as well as responses to injury and infection. FIBRODYSPLASIA OSSIFICANS PROGRESSIVA
Growth factors and signals are fundamental to many diseases. A single point mutation in the DNA coding for a bone morphogenetic protein is responsible for the development of FOP, a very debilitating disease where muscles are progressively turned into bones. Understanding these mechanisms allowed the selection of a drug, currently used to treat cancer, that may possibly be repurposed to treat FOP.2016-04-2706 min
Say You Love Satan 80s Horror PodcastEpisode 8 - Pet Sematary (1989)Become a member of the Say You Love Satan Army today! Join us!https://www.patreon.com/sayyoulovesatanpodcastThis episode:- Pathology Perversions: Fibrodysplasia ossificans progressiva (FOP)- Trailer Trash- Feature Presentation: Pet Sematary (1989)*outro track "Pet Sematary" by the Ramones from the 1989 album "Brain Drain"website: www.sayyoulovesatanpodcast.comemail: sayyoulovesatanpodcast@gmail.comPlease rate, review, and subscribe on iTunes!instagram: sayyoulovesatanpodcastT-shirts, stickers, and a collection of ghoulish garb is available now at our Redbubble store!http://www.redbubble.com/people/sayyoulovesatanartwork: Sam HeimerSupport the show2016-01-031h 35
The Dr Synonymous ShowFOP, Behcet's, Rare Disease DayAfter introduction and disclaimer, Dr Synonymous (aka, Dr Jonas) comments on recent events with the death of his father in law. Next he discusses a rare disease: fibrodysplasia ossificans progressiva (FOP). He follows information about it through the IFOP web site/ Facebook site, then to NHGRI and OMIM with in depth comments from those sites. He notes a feature about Behcet's Syndrome on the NHGRI site before speaking of National Rare Disease Day, February 28th. He then reviews Patient and Health Care Blogs including Dr Fat to Fit, Final Trick and Medical Mojave. Dr Kenny Lin writes about recent medical stud...2013-02-131h 00