Podcasts about epidermolysis

Das ausführliche Interview zum Thema "Epidermolysis Bullosa". Mit Prof. Dr. med. Cristina Has und Prof. Dr. Tobias Hirsch, geführt von Antje Thiel. Epidermolysis bullosa bezeichnet eine seltene Erkrankung der Haut, die genetisch bedingt ist und oft von Geburt an auftritt. In Deutschland leben geschätzt etwa 4.700 Betroffene. Epidermolysis bullosa oder kurz EB kommt aus dem Lateinischen und steht für eine blasenförmige Ablösung und Erosionen an Haut oder Schleimhäuten nach (geringer) mechanischer Belastung. Rund eines von 20.000 neugeborenen Babys wird mit EB geboren. Kinder mit EB werden auch als „Schmetterlingskinder“ bezeichnet, weil „ihre Haut so verletzlich ist wie die Flügel eines Schmetterlings.“ In diesem Podcast berichten Frau Prof. Dr. med. Cristina Has und Herr Prof. Dr. Tobias Hirsch eindrucksvoll von ihren Erfahrungen aus ihrer täglichen Praxis. Diese Erkrankung kann in ganz verschiedenen Formen und Schweregraden auftreten und muss entsprechend individuell diagnostiziert und therapiert werden. Erfahren Sie mehr über dieses Krankheitsbild, die konservative Therapie sowie einen wissenschaftlichen gentherapeutischen Ansatz anhand eines Fallbeispieles. Erhalten Sie praktische Tipps zur Wundversorgung, zu Studiendaten oder auch zur Interessengemeinschaft EB und klinische Zentren, an die sich Betroffene wenden können.

Epidermolysis bullosa bezeichnet eine seltene Erkrankung der Haut, die genetisch bedingt ist und oft von Geburt an auftritt. In Deutschland leben geschätzt etwa 4.700 Betroffene. Epidermolysis bullosa oder kurz EB kommt aus dem Lateinischen und steht für eine blasenförmige Ablösung und Erosionen an Haut oder Schleimhäuten nach (geringer) mechanischer Belastung. Rund eines von 20.000 neugeborenen Babys wird mit EB geboren. Kinder mit EB werden auch als „Schmetterlingskinder“ bezeichnet, weil „ihre Haut so verletzlich ist wie die Flügel eines Schmetterlings.“ In diesem Podcast berichten Frau Prof. Dr. med. Cristina Has und Herr Prof. Dr. Tobias Hirsch eindrucksvoll von ihren Erfahrungen aus ihrer täglichen Praxis. Diese Erkrankung kann in ganz verschiedenen Formen und Schweregraden auftreten und muss entsprechend individuell diagnostiziert und therapiert werden. Erfahren Sie mehr über dieses Krankheitsbild, die konservative Therapie sowie einen wissenschaftlichen gentherapeutischen Ansatz anhand eines Fallbeispieles. Erhalten Sie praktische Tipps zur Wundversorgung, zu Studiendaten oder auch zur Interessengemeinschaft EB und klinische Zentren, an die sich Betroffene wenden können. Das gesamte Gespräch, geführt von Antje Thiel, finden sie als Bonusfolge im Podcast-Feed.

In this episode of Talking Life, Rory speaks to Myra Ali, a famous journalist who has a condition called Epidermolysis bullosa (EB), or ‘Butterfly Skin', where painful blistering makes sufferer's skin and organs, as fragile as the wings of a butterfly. He's also joined by Claire Mather, the Director of DEBRA, a U.K charity that specializes in treating and helping those with the condition.  

In this episode Melissa shares her son Landon's journey. Landon was born with a genetic disorder called  Epidermolysis bullosa (EB) and the most fatal type of EB that cut his life short. Melissa encourages parents to utilize the resources the hospital has to lessen the burden of a prolonged hospital stay. She talks about the advice she would give to other parents and the everyday signs she gets from Landon in heaven.  Connect with Heather on Social here:  https://www.facebook.com/hspeakman https://www.instagram.com/speakman6pack/ http://frombrokentobrave.com/  

We have two special guests joining us for today's episode: Isaiah Zarate & Mark Colety. We're taking this episode to open up about our health in all aspects, and we thought these two would be great guests. Isaiah and Mark have been patient and nurse for over 10 years now, where they see each other around 3 times a week during dialysis treatment. So grab your favorite drink and get ready to learn more about kidney failure, Epidermolysis bullosa (EB) & dialysis. *For more Mark & Isaiah, they will be joining us on this week's patreon! Mark goes more into how he balances music with medicine, and they both give their best dad jokes!* You can find Isaiah and Mark at: https://www.instagram.com/redcrocs19/ https://www.instagram.com/markcoletymusic/ https://www.youtube.com/channel/UCxdXV67EijTpnipG0PGu8aA https://open.spotify.com/artist/4RvssqPiaQtJzjNVL3Wauu?si=DfR2dx9zSvapyyHyUK-4lQ Social Media: Patreon: https://www.patreon.com/talksnsips Instagram: https://www.instagram.com/talksnsips/ https://www.instagram.com/cecy.encizo/ https://www.instagram.com/jayfoxx__/ Facebook: https://www.facebook.com/Talks-Sips-105205538366787 Twitter: https://twitter.com/TalksNSips TikTok: https://www.tiktok.com/@talksnsips?lang=en * For the list of our resource links please visit: talksnsips.com/in-sickness-and-in-health* --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app

Dr. Jakub Tolar is the Dean of the University of Minnesota Medical School and is a Distinguished McKnight Professor in the Department of Pediatrics, Blood and Marrow Transplant & Cellular Therapy. He is the Vice President for Clinical Affairs at the University of Minnesota, Board Chair for University of Minnesota Physicians and co-leader of M Health Fairview. We have come to know him not only as a researcher and dean, but as a passionate advocate who is putting artificial intelligence at the forefront of academic medicine. 1:00 MaML @ UMN 2:08 Tools to Alleviate Human Suffering 4:00 The Brain Machine 6:56 How do we know things are real? 9:00 Serving Minnesotans 10:19 Meet the Dean 16:48 Rare Genetic Disorders and ML 18:14 Mori et al. Article (see citation) 19:00 Medical Errors 20:45 AI in Medical Education (see citation) 24:25 Mistakes of Modern Living 24:50 Antiquity and Modernity 30:35 Data Ownership  32:38 The EHR Conundrum 37:29 Technological Liberation 39:15 Epidermolysis bullosa 47:23 Dean Tolar's Advice 51:22 Future of AI in Medicine 54:50 Make Journaling a Part of Your Day! Mori, J., Kaji, S., Kawai, H. et al. Assessment of dysplasia in bone marrow smear with convolutional neural network. Sci Rep 10, 14734 (2020). https://doi.org/10.1038/s41598-020-71752-x Lentz A, Siy JO, Carraccio C. AI-ssessment: Towards Assessment As a Sociotechnical System for Learning. Acad Med. 2021;96(7S):S87-S88. doi:10.1097/ACM.0000000000004104 Interviewer: Madeline Ahern Producer: Melanie Bussan Art: Melanie Bussan Follow us on Twitter: https://twitter.com/TheMaMLPodcast?s=20

Die heterogene Krankheitsgruppe der hereditären Epidermolysen zeichnet sich durch Mutationen aus, die zu einem Strukturverlust der basalen Keratinozyten und Strukturproteinen führen. Durch kleine Traumata und mechanische Reizungen entstehen an Haut und Schleimhäuten Blasen. Die zahlreichen Formen der Epidermolysen lassen sich in drei Kategorien unterteilen: Epidermolysis bullosa simplex, junctionalis und dystrophica.

My guest this week is Liz Trinnear, a TV host known to millions across Canada.  She is gorgeous, confident and talented and yet she has been suffering from a rare skin codition called Epidermolysis bullosa (EB).  Liz talks about growing up with the condition, the diagnosis and finding a cure.   We discuss bullying, oversharing and how she has found confidence through telling her story.   

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Here’s another great opportunity for occupational therapy discussion. Dean Clifford, a 38-year-old man from Queensland, suffers from a severe skin condition known Epidermolysis bullosa, causing him to have the most fragile skin, which blisters frequently and takes much longer to heal than usual.

Skin as fragile as butterfly wings, that blisters inside and out. This is Epidermolysis bullosa, the rare disease that our guest Kourtney Kujawa, sister Shaelyn and mom Janelle share about on today's Fire & Grace podcast. Kourtney has endured more pain than any of us could ever imagine including skin cancer and an amputation of her hand, and yet, she has a remarkable HOPE! This beautiful 22 year-old woman is wise beyond her years and has an exciting NEW skincare line, Koko & Shae, a family endeavour, with an incredibly powerful story of HOPE!!! Instagram: @koko_shae Facebook: Koko & Shae  Blog: https://kourtneyk.blogspot.com/?m=1

Co-founder Of Crosstown Brewing Clark Ortkiese and President Of Memphis Comedy Festival Nathan Hiller join Mark to talk about a treatment for Epidermolysis bullosa with Stem cell Gene Therapy, applying the scientific method to brewing, and making the pope drink rancid beer.Follow Crosstown Brewing on FacebookFollow Memphis Comedy Festival On FacebookWant to guest on the show? want us to cover a topic? Then contact us on our instagram, facebook or twitter. Or email us at:drhecklepod@gmail.com

"Mir ist es mehr wert, mich ab und zu mal zu verletzen und wirklich zu leben, als zuhause in der sicheren Stube zu sitzen!" Lena Riedl über ihr Leben mit Epidermolysis bullosa (EB), warum sie Tattoos und die Sonne liebt, Schmerzen keine Aufmerksamkeit schenkt und sich übers Sudern ärgert.

In this episode, Bill Masur speaks with Mark Berisha about his experience leading his family as a father with a son who was born with Epidermolysis bullosa a rare genetic condition. This talk is part of the Men of Character Conference that will be airing from 9/24 to 9/26 at www.menofcharacterconference.com --- Support this podcast: https://anchor.fm/menofcharacter/support

Today's show Matt sat down with two amazing lady’s, Liz Collins and her superstar of a daughter Claudia Scanlon. Claudia was born with Epidermolysis bullosa (EB) also known as butterfly syndrome. EB is a distressing and painful genetic skin condition that causes the skin layers and internal body linings to separate. Claudia talks about living with EB, Her great friends and nurses, her attitude to life and the amazing bond she has with her mam Liz. Liz is the Family Patient Ambassador for Debra Ireland. Please give your support to this amazing charity. www.debraireland.org Special thanks to; Niall Reilly - www.rooneymedia.com Carolyn Harvey- ISANutrition Magic Minds Podcast Team Matt Burke- Creator/Host Derek Mc Donnell - Sound & Audio Production Aaron Keogh - Social Media & Promotion --- Send in a voice message: https://anchor.fm/magic-minds/message

We spoke with Gary Lowe today with Cannariginals and the great work that he's doing with his product and the success that he's having with people all over the globe - especially with those afflicted with Epidermolysis bullosa (the Butterfly Children). He talks about the current status of recreational cannabis in California and that it's not all sunshine and roses with many canna companies closing their doors and different counties and towns banning cannabis in their communities. But there is always tomorrow and by sharing the successful accounts of those who benefit from the great plant, we can educate one person at a time. You can find out more about Gary's products at these sites: https://cannariginals.com/ https://theramu.com/ http://aponibiobotanica.com/ If you are on disability, receive Medicaid or are a disabled veteran, check out Haven CBD for discounted cbd products at www.havencbd.com . Catch up with us here: http://www.cbdtalkpodcast.com/ https://www.facebook.com/cbdtalkpodcast/ https://twitter.com/cbdtalkpodcast https://www.youtube.com/channel/UCX1W74FEgn5LbOSwxgWVP7Q https://soundcloud.com/cbd-talk-podcast/ Also, get information on CBD from https://www.reddit.com/r/CBD/

Hosts: Ed Brown, Dr. Shyane Joseph, Penny Dumsday. 00:01:08 A 7-year-old boy's life is saved from a rare skin disease after researchers genetically modify and grow his skin in a lab. 00:07:25 The widespread use of penicillin may been a factor in the very early development of Methicillin-resistant Staphylococcus aureus (MRSA). 00:15:06 A new study suggests that while cold blooded dinosaurs ruled the daytime, mammals evolved to be nocturnal. And when the dinosaurs were wiped out, many mammals switched back to diurnal life. 00:19:21 NASA scientists say the giant hole in the ozone layer is shrinking, and is now the smallest it's ever been since 1988. 00:24:15 Eleven papers have been published in the journal Clinical Infectious Diseases and presented at the recent scientific meeting revealing the scale and damage caused by streptococcus infections. The authors have called for an acceleration in the development of a streptococcus vaccine.   This episode contains traces of protestors crashing a side event at the 23rd Conference of Parties to the United Nations Framework Convention on Climate Change, known as COP 23. The US sent only a small delegation of low-level Whitehouse staffers and representatives from fossil fuel and nuclear power organisations to speak on a panel. Former New York City mayor Mike Bloomberg observed that “promoting coal at a climate summit is like promoting tobacco at a cancer summit.”  

De kallas för fjärilsbarn, barn med sjukdomen Epidermolysis bullosa med hud så tunn och känslig att den för tankarna till fjärilsvingar. Nu väcker genterapi hopp om ett bättre liv för barnen. Vissa former av sjukdomen är så allvarliga att barnen dör under sina första år, men en allvarligt sjuk sjuåring i Tyskland har nu fått nu hud på 80 procent av kroppen, med hjälp av så kallad genterapi. Vi möter svenske nioåringen Gaston som har en lindrigare variant av sjukdomen, men som är nog så besvärlig i hans vardag, och hör mer om möjligheterna och även riskerna med genterapi. I Vetenskapsradions veckomagasin hör vi också om hur vi alla tack vare så kallade blockkedjor kan bli digitala medborgare i Estland, och om får som visar sig vara lika bra på att se skillnad på människor som vi är. Dessutom möter vi klimatvisselblåsaren som petades av Trumpadministrationen när han larmade om hur urinvånares byar i Alaska riskerar att spolas bort av en stormflod.

Photo courtesy of Julie Oliver, Ottawa Citizen:  http://ottawacitizen.com/news/local-news/butterfly-child-dreams-of-the-northern-lights Jonathan Pitre suffers from Epidermolysis bullosa which is a rare, painful, skin disease. There is no cure. Jonathan is receiving treatment in Minnesota ahead of a stem cell transplant.   Guest: Tina Boileau, mother of Jonathan Pitre. Guest: Jonathan Pitre, recipiant of stem cell transplant. https://www.gofundme.com/2jxyu6qc Was there any reason to put a publication ban in place for the crossbow murder case? When is the best time for a ban to be put in?   Guest: Lorne Honnickman, Lawyer & Partner with Brauti Thorning Zibarras Lawyers.   Canada's economy brought in a weak quarter… the weakest since the Great Recession. This was due to slumping exports and Alberta's wildfires. How do we get back on track? ALSO; Ontario is planning on testing a guaranteed income project. Could guaranteed income work? What are downfalls?   Guest: Dr. Mike P. Moffatt, expert on Economics, Interim Director of the Lawrence National Centre for Policy and Management, Ivey Business School, Western University.

Jonathan Pitre suffers from Epidermolysis bullosa which is a rare, painful, skin disease. There is no cure. Jonathan is receiving treatment in Minnesota ahead of a stem cell transplant. Guest: Jonathan Pitre, recipiant of stem cell transplant. https://www.gofundme.com/2jxyu6qc