Best Marfan Syndrome Podcasts (2024)

1
Navigating Life with HLHS and Marfan Syndrome: Rachael's Powerful Story 32:12

6d ago32:12

32:12

Send us a Text Message. Discover the remarkable resilience of Rachael Gott, our extraordinary guest born with hypoplastic left heart syndrome (HLHS). Despite her condition remaining uncorrected, Rachel has navigated a complex medical journey, including ten cardiac ablations and two device implants, all while avoiding open-heart surgeries. Rachael a…

1
Episode 104 Marfan Syndrome with Dr. Amanda Lynn Hoffman 59:26

21d ago59:26

59:26

In today’s episode, we have the honor of hosting a truly remarkable guest, Dr. Amanda Lynn Hoffman. As the first Naturopathic physician with Marfan syndrome to specialize in this field, Dr. Amanda Lynn offers invaluable insights for both individuals living with Marfan's Syndrome and their caregivers. Her groundbreaking work in Naturopathic medicine…

1
Welcome, Bendy Buddies! 1:47

43m ago1:47

1:47

Each week, join Dr. Linda Bluestein (AKA The Hypermobility MD) on her quest to demystify the wide world of symptomatic joint hypermobility. Get ready to better understand your own bendy body in our newest season – available now! Learn more about your ad choices. Visit megaphone.fm/adchoicesBy Dr. Linda Bluestein, MD

1
Overcoming Pain in EDS: Building Stronger Bodies with Wealth Founders Katie & Andrew Dettelbach 1:18:20

33m ago1:18:20

1:18:20

In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, chats with Katie and Andrew Dettelbach, founders of Whealth, a program dedicated to helping people with hypermobility and chronic pain. Both Katie and Andrew have hypermobile Ehlers-Danlos Syndrome (hEDS) and have turned their personal struggles into a platform …

1
Discovering a Myocardial Bridge at 65: Jeff's Journey to Heart Health Advocacy 32:15

3h ago32:15

32:15

Send us a text Have you ever ignored a small discomfort only to realize it was something far more serious? Join us on "Heart to Heart with Anna" for an eye-opening conversation with Jeff, the creator and host of a non-profit podcast network, who discovered a congenital heart defect called a myocardial bridge at the age of 65. Jeff recounts his terr…

1
Darren Croft on killer whale matriarchs and the menopause 28:24

1d ago28:24

28:24

Darren Croft studies one of the ocean’s most charismatic and spectacular animals – the killer whale. Orca are probably best known for their predatory behaviour: ganging up to catch hapless seals or attack other whales. But for the last fifteen years, Darren Croft’s focus has been on a gentler aspect of killer whale existence: their family and repro…

1
Twins (Episode 175) 30:37

2d ago30:37

30:37

Twins account for 3% of live births in the US and are at risk of higher rates of fetal growth restriction, congenital anomalies, twin-twin transfusion syndrome, twin anemia polycythemia sequence, selective fetal growth restriction, and cord entanglement. In this episode, Michael Posencheg, MD, a Children's Hospital of Philadelphia neonatologist and…

1
Grief, Healing, and Mental Health Strategies for Chronic Illness with Natasha Trujillo, PhD 1:04:53

7d ago1:04:53

1:04:53

In this insightful episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with Dr. Natasha Trujillo, a licensed sports psychologist specializing in grief, loss, and chronic illness. Dr. Trujillo and Dr. Bluestien both work with the Colorado Ballet. Dr. Trujillo discusses the complex emotional landscape of grieving when faced with chronic p…

1
Episode 105 : The Beauty and Burden of Autism with Dr. Sandra Paulsen 1:03:30

7d ago1:03:30

1:03:30

In episode 105 of the One Thing Podcast, Dr. Adam Rindeinterviews Dr. Sandra Paulsen, a renowned psychologist and author, about her professional journey and expertise in psychotherapy, focusing on her work with autism and Eye Movement Desensitization and Reprocessing (EMDR). Dr. Paulsen discusses her own experiences with autism, her approach to tre…

1
Bill Gates on vaccines, conspiracy theories and the pleasures of pickleball 35:59

8d ago35:59

35:59

Bill Gates is one of the world's best-known billionaires - but after years at the corporate coalface building a software empire and a vast fortune, his priority now is giving that wealth away. And his ethos for doing it has been shaped by science. Famed for co-founding Microsoft, in recent decades Bill’s attention has turned to philanthropy via The…

1
Group Rehabilitation for POTS with Emily Rich, OT 56:21

14d ago56:21

56:21

In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, sits down with Emily Rich, an occupational therapist specializing in POTS (Postural orthostatic tachycardia syndrome), Ehlers-Danlos syndromes, and other chronic conditions. Emily, who is also a patient with hypermobile EDS and POTS, shares her insights on how o…

1
From Heart Block to Myotonic Dystrophy: A Survivor's Tale 33:58

10d ago33:58

33:58

Send us a Text Message. What if your heart's rhythm was out of sync from birth, yet you persevered to defy medical odds? Join us as Gwenyth Murphy, a resilient second-generation congenital heart defect survivor, shares her compelling journey of managing complete heart block and other heart conditions. From coping with an abnormally low heart rate a…

1
Teen Communication: Learning language to build character, resilience, and relationships (Episode 174) 27:07

18d ago27:07

27:07

Talking with teenagers can feel challenging, but in this episode, Kenneth Ginsburg, MD, MSEd, an attending physician in the Division of Adolescent Medicine and the Co-Director of the Center for Parent and Teen Communication at Children's Hospital of Philadelphia, shares lessons learned from his years of research and experience with adolescents. Dr.…

1
Understanding the Brain's Role in Chronic Pain with Kaitlin Touza, PhD 1:06:41

21d ago1:06:41

1:06:41

In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, engages in an enlightening conversation with Dr. Kaitlin Touza, a renowned pain psychologist. Dr. Touza delves into the complexities of chronic pain, explaining how the nervous system, brain processes, and psychological factors contribute to pain experiences. Sh…

1
Kip Thorne on black holes, Nobel Prizes and taking physics to Hollywood 35:38

22d ago35:38

35:38

The final episode in this series of The Life Scientific is a journey through space and time, via black holes and wormholes, taking in Nobel-prize-winning research and Hollywood blockbusters! Kip Thorne is an Emeritus Professor of Theoretical Physics at Caltech, the California Institute of Technology, and someone who’s had a huge impact on our under…

1
Connective Tissue Disorders and Lipedema with Karen Herbst, MD 1:16:38

28d ago1:16:38

1:16:38

In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, hosts an enlightening discussion with Dr. Karen Herbst, a leading expert on lipedema and other adipose connective tissue diseases. Dr. Herbst shares her extensive knowledge on the complexities of lipedema, Dercum's disease, and their connection to connective tis…

1
Chapter 10: Life Lessons from Congenital Heart Defects: Stories of Hope and Resilience 35:54

24d ago35:54

35:54

Send us a Text Message. What happens when resilience meets a congenital heart defect? Join us as we uncover the extraordinary journeys of women who have turned their medical challenges into stories of hope and triumph. Begin with Emily Falcon's deeply moving "A Letter to my Younger Self," where she offers wisdom and reflections that will resonate w…

1
Vicky Tolfrey on parasport research and childhood dreams of the Olympics 28:29

29d ago28:29

28:29

It's summer - no really - and although the weather might have been mixed, the sporting line-up has been undeniably scorching - from the back-and-forth of Wimbledon, to the nail-biting Euros, to the current pageantry of the Summer Olympics. Next month the 2024 Paralympic Games get underway in Paris, involving the world’s very best para athletes; and…

1
Linking Mast Cell Activation, Autoimmunity, and EDS with Kara Wada, MD 1:01:02

1M ago1:01:02

1:01:02

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
Episode 103. Conscious Eldering with Ron Pevny 40:44

20d ago40:44

40:44

Episode 103: Conscious Eldering with Ron Pevny These days, getting older seems to be more like a war rather than a rite of passage. "Take this pill or this potion to reverse aging and stay young," they say. But is that really how we should view aging? We question this and more in this episode, where I welcome Ron Pevny, the director of the Center f…

1
Chapter 9 of "The Heart of a Heart Warrior" Featuring Heart Warrior Authors 47:06

21d ago47:06

47:06

Send us a Text Message. How do heart warriors find incredible strength amidst life's most challenging moments? In this episode of "Heart to Heart with Anna," we bring you deeply touching and empowering stories from individuals who have triumphed over congenital heart defects (CHD). Join us as Megan Tones sets the stage with an introduction to Chapt…

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

1M 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

23d 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 1:05:27

1M ago1:05:27

1:05:27

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
"The Heart of a Heart Warrior" Chapter 8 Featuring Megan Tones and Julie Kerr 42:01

28d ago42:01

42:01

Send us a Text Message. Ever wondered how a heartfelt community can transform lives through stories and shared experiences? Join me on this special episode of "Heart to Heart with Anna" as I express my gratitude for the overwhelming birthday wishes from the congenital heart defect community. You'll be introduced to the latest literary gem from Baby…

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

2M 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

2M 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

2M 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
Heart Warrior Transformations: From Challenges to Creative Triumphs 28:11

2M ago28:11

28:11

Send us a Text Message. Have you ever wondered how living with a congenital heart defect can shape one's life journey? This week, we’re diving into the remarkable stories of heart warriors, those extraordinary individuals who navigate life with congenital heart defects. I'm Anna Jaworski, and in this episode, we explore the powerful metaphor of tra…

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

2M 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
Navigating Parenthood with a Congenital Heart Defect During Covid-19: Amelia Woods' Journey 30:52

2M ago30:52

30:52

Send us a Text Message. What happens when you're expecting a baby with a congenital heart defect during a global pandemic? Join me, Anna Jaworski, as I sit down with Amelia Woods, a courageous heart mom who faced this exact challenge. Amelia shares the emotional rollercoaster of managing her son Henderson's dextrotransposition of the great arteries…

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

2M 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
Navigating Romantic Life with a Heart Condition: Insights from Dr. Corinne Smorra 38:41

2M ago38:41

38:41

Send us a Text Message. What happens when your heart condition becomes part of your dating narrative? Today on Heart to Heart with Anna, we welcome back Dr. Corinne Smorra, a psychotherapist and adult living with congenital heart defects (CHD). Dr. Smorra opens up about her personal journey with truncus arteriosus and sheds light on the myths and m…

1
Episode 102 . Using Breathwork to transform your health with Dr. Geoff Lecovin 47:49

2M ago47:49

47:49

Welcome episode to 102! featuring Geoff Lecovin, a naturopathic doctor, chiropractor, acupuncturist, and expert in breathwork. Dr. Lecovin provides an in-depth explanation of breathwork, its history, physiological effects, and benefits. He discusses how breathwork can induce altered states of consciousness and access the body's innate healing abili…

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

2M 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

3M 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
James Robinson's Emotional Odyssey: Love and Loss in a Heart Family 44:11

2M ago44:11

44:11

Send us a Text Message. What happens when your entire world is defined by hospital walls and medical jargon? On "Heart to Heart with Anna," we share the poignant and raw journey of James Robinson, a father who walks us through the emotional highs and profound lows of raising his son Nadav, who was born with a congenital heart defect known as single…

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

3M 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 1:00:49

3M ago1:00:49

1:00:49

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
Episode 101. PANS and PANDAS with Dr. Nancy O'hara 46:27

3M ago46:27

46:27

Pediatric Acute Onset Neuropsychiatric Disorder Associated with Streptococcus Infection and Pediatric Acute-onset Neuropsychiatric Syndrome is a troubling condition that involves sudden onset of OCD, anxiety, tics, sometimes aggression, sometimes ADHD, sometimes depression, sometimes dysgraphia.. that abruptly happens almost overnight. In some case…

1
Milestones and Reflections: 100 Episodes of Bendy Bodies with Linda Bluestein, MD 1:19:42

3M ago1:19:42

1:19:42

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…

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