Best Marfan Syndrome Podcasts (2024)

1
Anne Child on Marfan syndrome and love at first sight 28:35

11d ago28:35

28:35

Marfan syndrome is a genetic disorder that makes renders the body’s connective tissues incredibly fragile; this can weaken the heart, leading to potentially fatal aneurysms. What’s more, anyone with the condition has a 50/50 chance of passing it on to their children. Dr Anne Child is a clinical geneticist who’s dedicated her professional life to fi…

1
Linking Mast Cell Activation, Autoimmunity, and EDS with Kara Wada, MD 1:00:02

5h ago1:00:02

1:00:02

In this episode, Dr. Linda Bluestein, the Hypermobility MD, delves into the intricate connections between the immune system and hypermobility disorders with Dr. Kara Wada. A quadruple board-certified physician and Sjogren's patient, Dr. Wada shares her expertise on mast cell activation syndrome, autoimmunity, and the role of inflammation. Discover …

1
Dawn Bonfield on inclusive engineering, sustainable solutions and why she once tried to leave the sector for good 28:21

1h ago28:21

28:21

The engineering industry, like many other STEM sectors, has a problem with diversity: one that Dawn Bonfield believes we can and must fix, if we're to get a handle on much more pressing planetary problems... Dawn is a materials engineer by background, who held roles at Citroën in France and British Aerospace in the UK. But, after having her third c…

1
Rabies (Episode 173) 15:35

3h ago15:35

15:35

Contact with infected bats is the most common cause of human rabies deaths in the US, but dog rabies remains common worldwide. Learn about other wildlife that can carry rabies, post-exposure prophylaxis, high-risk hobbies and careers, and what rabies can teach us all. Andrew Steenhoff, MBBCh, DCH, attending physician in the Division of Infectious D…

1
Examining The Future of EDS Diagnosis and Care with EDS Society CEO Lara Bloom 1:04:27

5d ago1:04:27

1:04:27

In this episode, Dr. Linda Bluestein, the Hypermobility MD, hosts a captivating conversation with Lara Bloom, President and CEO of the Ehlers-Danlos Society. Lara shares her journey in advocating for rare diseases, the progress made in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), and the upcoming updates in diagnostic c…

1
Raymond Schinazi on revolutionising treatments for killer viruses 28:39

24m ago28:39

28:39

In recent decades, we've taken huge steps forward in treating formerly fatal viruses: with pharmacological breakthroughs revolutionising treatment for conditions such as HIV, hepatitis and herpes. Raymond Schinazi has played a big role in that revolution. Ray was born in Egypt, where his mother’s brush with a potentially deadly illness during his c…

1
Janet Treasure on eating disorders and the quest for answers 28:36

4d ago28:36

28:36

From anorexia nervosa to binge-eating, eating disorders are potentially fatal conditions that are traditionally very difficult to diagnose and treat - not least because those affected often don’t recognise that there’s anything wrong. But also because of the diverse factors that can influence and encourage them. Janet Treasure is a Professor of Psy…

1
Epilepsy and Teens: Counseling advice on managing epilepsy as an adolescent (Episode 172) 21:58

5d ago21:58

21:58

According to the CDC, approximately 0.6% of children aged 0-17 have active epilepsy, so in a school of 1,000 students, this means 6 of them could have epilepsy. Adolescence is a time when patients have more autonomy in caring for their chronic disease and have changes in lifestyle factors, which could be risk factors for increased seizures. In this…

1
Conny Aerts on star vibrations and following your dreams 28:35

18d ago28:35

28:35

Many of us have heard of seismology, the study of earthquakes; but what about asteroseismology, focusing on vibrations in stars? Conny Aerts is a Professor of Astrophysics at the University of Leuven in Belgium - and a champion of this information-rich field of celestial research. Her work has broken new ground in helping to improve our understandi…

1
Advocacy Curriculum in Pediatric Residency Education (Episode 171) 24:12

26d ago24:12

24:12

The Children's Hospital of Philadelphia (CHOP) advocacy curriculum has a rich history of teaching pediatric residents how to incorporate being an advocate into their career as a pediatrician. Noreena Lewis, JD, the Co-Director of the Community Pediatrics and Advocacy Program (CPAP), explains the various ways pediatricians can engage in advocacy, so…

1
Season 4 Wrap: Reading Your Comments 6:58

1M ago6:58

6:58

Welcome back, every Bendy Body! In this special episode, I wrap up season four and share exciting plans for season five. Join me as I reflect on our journey, from focusing on high-risk populations like dancers and gymnasts to diving deep into medical topics. Listen in for gratitude-filled shoutouts from our wonderful listeners as I read their heart…

1
Sickle Cell Gene Therapy (Episode 170) 19:57

2M ago19:57

19:57

New research has led to the approval of sickle cell gene therapy and CHOP has played a big role in both the research and implementation of this innovative treatment. In this episode, Dr. Abraham Haimed, an attending in the Division of Hematology at Children's Hospital of Philadelphia, explains how a patient's own hematopoietic stem cells can be edi…

1
101. Breaking the Vicious Cycle of Chronic Illness with Ashok Gupta 1:03:49

2M ago1:03:49

1:03:49

In this conversation, Dr. Linda Bluestein interviews Ashok Gupta about his experience breaking the vicious cycle of chronic illness when he had ME-CFS. They discuss the impact of chronic conditions, the brain's priority of survival, and the vicious cycle of symptoms. Ashok explains the Gupta Program, which aims to make patients aware of subtle dang…

1
Milestones and Reflections: 100 Episodes of Bendy Bodies with Linda Bluestein, MD 1:20:42

2M ago1:20:42

1:20:42

Dr. Linda Bluestein celebrates 100 episodes of Bendy Bodies discussing the most rewarding part of hosting the podcast and the challenges of podcasting. She emphasizes the importance of balancing the complexity of EDS and the need for healthcare professionals to understand and empathize with the struggles of patients with hypermobility conditions. D…

1
99. From News Anchor to Advocate: A POTS and EDS Journey with Summer Dashe 1:02:17

2M ago1:02:17

1:02:17

Summer Dashe, a former news anchor and advocate for the chronically ill, shares her POTS and EDS journey. She covers how she manages her symptoms in everyday life and the challenges of getting diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers-Danlos Syndrome). #dysautonomia #ChronicIllness #POTSAwareness Takeaways Gett…

1
An Antiracist Approach in Primary Care 24:14

2M ago24:14

24:14

A recent publication in Pediatrics by George Dalembert, MD, MSHP and Aditi Vasan, MD, MSHP helps us learn more about how to use an antiracist approach to social care integration in primary care. In this episode, Drs. Dalembert and Vasan walk us through the recommendations made in their commentary with actionable steps for how we can all integrate s…

1
98. Environmental Triggers of Mast Cell Disease with Tania Dempsey, MD 1:19:15

2M ago1:19:15

1:19:15

Summary Dr. Tania Dempsey discusses mast cell activation syndrome (MCAS) with a focus on environmental triggers of mast cell disease. Takeaways Infections can trigger mast cell reactions and people with MCAS may react differently than those without. Identifying and addressing environmental triggers, such as mold and plastics, is important in managi…

1
97. Learning to Spot the Signs of Ehlers-Danlos Syndromes with Guest Host, Kate Colbert 1:08:47

2M ago1:08:47

1:08:47

In this special “EDS Awareness Month” episode of the Bendy Bodies Podcast, founder Dr. Linda Bluestein and guest host Kate Colbert discuss how everyone can learn to spot the signs of Ehlers-Danlos Syndromes. Dr. Bluestein emphasizes the importance of EDS awareness, as many people are still not getting the evaluations and care they need. She also de…

1
Pre-exposure Prophylaxis (PrEP): HIV Prevention for Adolescents 34:57

3M ago34:57

34:57

As of 2020, 20% of new HIV diagnoses were among young people aged 13-24 years. Primary care pediatricians can play an important role in the prevention of HIV through standard, non-stigmatizing sexual health and HIV prevention care, which is why we are talking about PrEP with Sarah Wood, MD, MSHP, and Zoe Gould, LCSW. Learn about the role of PrEP, a…

1
96. Coping with Dance Injuries and Career Transitions with Chelsea Pierotti, PhD and Guest Cohost, Jennifer Milner 46:19

3M ago46:19

46:19

In this episode, Dr. Chelsea Pierotti discusses coping with dance injuries and transitions, both from a physical and psychological perspective. She explains that the way dancers appraise their injuries and their emotional response to them can greatly impact their coping mechanisms. Dr. Pierotti emphasizes the importance of shifting the mindset from…

1
Primary Care Perspectives: Episode 167-- Nutrition Advice for Premature Babies at Discharge from the NICU 25:18

3M ago25:18

25:18

The CHOP Neonatal Intensive Care Unit is working on enhancing communication of nutrition plans to primary care providers when infants are discharged. In this episode, Sarvin Ghavam, MD, an attending neonatologist and Kristina Spaide, MS, RD, CNSC, clinical nutrition manager, identify the unique nutritional needs of premature babies, common feeding …

1
Mike Edmunds on decoding galaxies and ancient astronomical artefacts 32:42

3M ago32:42

32:42

What is the universe made of? Where does space dust come from? And how exactly might one go about putting on a one-man-show about Sir Isaac Newton? These are all questions that Mike Edmunds, Emeritus Professor of Astrophysics at Cardiff University and President of the Royal Astronomical Society (RAS), has tackled during his distinguished career. An…

1
Hannah Critchlow on the connected brain 28:09

3M ago28:09

28:09

With 86 billion nerve cells joined together in a network of 100 trillion connections, the human brain is the most complex system in the known universe. Dr. Hannah Critchlow is an internationally acclaimed neuroscientist who has spent her career demystifying and explaining the brain to audiences around the world. Through her writing, broadcasting an…

1
Primary Care Perspectives: Episode 166-- Marfan Syndrome 17:07

3M ago17:07

17:07

How well do you know the stigmata of Marfan Syndrome, which are an important components of the pre-participation sports physical? Staci M. Kallish, DO, a clinical geneticist at Children's Hospital of Philadelphia reviews how the clinical diagnosis of Marfan Syndrome is made and tools that can be used in screening and diagnosis. Also, learn about th…

1
95. Pain Care Redefined: Non-Drug Therapies for Pain Relief with Heather Tick, MD 1:44:10

3M ago1:44:10

1:44:10

Dr. Heather Tick, a renowned pain expert, discusses non-drug therapies for pain relief; applying the principles of integrative medicine for comprehensive pain care. She emphasizes the need for education and understanding of pain neuroscience to empower patients. Dr. Tick also highlights the significance of nutrition in reducing chronic pain and inf…

1
Fiona Rayment on the applications of nuclear for net zero and beyond 28:27

4M ago28:27

28:27

The reputation of the nuclear industry has had highs and lows during the career of Dr Fiona Rayment, the President of the Nuclear Institute. But nowadays the role of nuclear science and engineering has become more widely accepted in the quest for carbon net zero. Growing up in Hamilton, Scotland during a time of energy insecurity, Fiona was determi…

1
94. Support and Bracing for Hypermobile Joints with Susan Chalela, MPT, and Guest Cohost, Scott Borjeson 1:08:27

4M ago1:08:27

1:08:27

In this Bendy Bodies with the Hypermobility MD podcast, Susan Chalela, MPT discusses support and bracing for hypermobile joints. She shares how her personal and professional experience with joint hypermobility led her to develop the Finding Functional Foundations approach which is being taught as part of The Ehlers-Danlos Society EDS ECHO program. …

1
Nick Longrich on discovering new dinosaurs from overlooked bones 28:11

4M ago28:11

28:11

We are fascinated by dinosaurs. From blockbuster hits to bestselling video games, skeleton exhibitions to cuddly plushies, the creatures that once roamed the planet have fully captured our imagination, giving us a portal to a completely alternative Earth. And it’s likely new species are still out there, waiting to be found... Dr Nick Longrich is a …

1
Sheila Willis on using science to help solve crime 28:11

4M ago28:11

28:11

Dr Sheila Willis is a forensic scientist who was Director General of Forensic Science Ireland for many years. She has spent her life using science to help solve cases, working on crime scenes and then analysing material in the lab, and presenting scientific evidence in court. It’s a complicated business. Forensic science relies on powerful technolo…

1
Primary Care Perspectives: Episode 165-- Stuttering 18:03

4M ago18:03

18:03

While many famous figures, including President Biden, have worked to decrease the stigma around stuttering, there are still significant psychosocial effects for many children who stutter. Joseph Donaher, PhD, CCC-SLP, a speech language pathologist at the Center for Childhood Communication at Children's Hospital of Philadelphia, teaches us about the…

1
Sir Charles Godfray on parasitic wasps and the race to feed nine billion people 28:10

4M ago28:10

28:10

Professor Charles Godfray, Director of the the Oxford Martin School tells Jim Al-Kahlili about the intricate world of population dynamics, and how a healthy obsession with parasitic wasps might help us solve some of humanity's biggest problems, from the fight against Malaria to sustainably feeding a global community of 9 billion people.…

1
Jonathan Van-Tam on Covid communication and the power of football analogies 36:49

5M ago36:49

36:49

Sir Jonathan Van-Tam, or ‘JVT’ as he's arguably better known, first came to widespread public attention in his role as Deputy Chief Medical Officer during the Covid-19 pandemic. But even before that, Jonathan had built an impressive career based on a long-held fascination with respiratory illness and infectious diseases. He’s worked across the publ…

1
93. Unveiling Taming the Zebra: A Discussion with Physical Therapists Patricia Stott and Heather Purdin 1:00:22

5M ago1:00:22

1:00:22

This episode centers around unveiling 'Taming the Zebra', a book co-authored by physical therapists, Dr. Patty Stott and Heather Purdin. The book aims to fill a void in understanding and provide therapists with the knowledge to effectively work with patients with hypermobility spectrum disorders (HSD) and Ehlers-Danlos Syndromes (EDS). It covers th…

1
Primary Care Perspectives: Episode 164-- Medical Legal Partnerships in Primary Care 23:18

5M ago23:18

23:18

How can lawyers and pediatricians work together to improve patient care? Osarugue Osah-Edoh and Andrew Yang, lawyers at Community Legal Services of Philadelphia and in the CHOP Medical Legal Partnership, educate us on how lawyers embedded in the healthcare setting support patients and their families with critical legal needs.…

1
92. Empowering Zebra Warriors: THE Guide to Effective Physical Therapy for EDS and HSD with Lilian Holm, DPT 1:07:33

5M ago1:07:33

1:07:33

In this Bendy Bodies podcast episode, Dr. Lillian Holm discusses effective physical therapy for EDS and HSD and the importance of correcting function to achieve pain relief and tolerance for exercise. She explains why physical therapy may not always lead to the expected outcome, emphasizing the need for specialized therapists and individualized tre…

1
91. Hand Problems in EDS with Corinne McLees, OT and Hand Coach 1:24:30

5M ago1:24:30

1:24:30

In this episode, Dr. Linda Bluestein and Corinne McLees discuss hand problems in EDS including pain, weakness, and injuries. This conversation covers various topics related to hand problems, including ring splints, hand exercises, avoiding strain and hyperextension, tips for traveling, challenges of the medical system for chronic pain, hand pain wi…

Podcasts Worth a Listen

Marfan Syndrome Podcasts

Podcasts Worth a Listen

Quick Reference Guide