Listener Reviews

In December 2024, I developed long COVID. Without knowing I had hEDS, I was facing the onset of symptoms completely alone (as a ‘fit and healthy’ 29 year old male I was dismissed by most doctors). YouTube’s algorithm pointed me in your direction, and it’s the best things that has happened to me.Over the past 18 months, my quality of life has improved significantly to the point where I’m now able to return to work as an Engineering Geologist here in Australia.This podcast has been one of the biggest factors in my recovery journey. In fact, I’m now a case study for my physiotherapist, who uses me as an example of the level of improvement that can be achieved. I’m in a much better state than I was 18 months ago when I first dragged myself into his office.Thank you so much for what you’ve done. Your work has genuinely accelerated my treatment and recovery journey for the better. The Bendy Bodies Podcast is now one of the first resources I recommend to new healthcare providers and family members.Thank you again for everything. I truly don’t think I’d be where I am today without all the hard work and effort you’ve put in.

Thank you so much, Linda, and the entire podcast team. I dip in and out of the Bendy Bodies Podcast series, and so much of the content resonates deeply with me. The podcasts have not only helped me feel less alone, but have also significantly improved my understanding of how to better manage my hEDS and associated conditions, as well as navigate and access the healthcare support I need.As someone living with hEDS and complex co-occurring conditions, I especially value the depth, compassion, and expertise brought to each episode. I also work within this field professionally and am currently a postgraduate researcher focusing on how to reduce diagnostic delays for autistic people with EDS/HSD. I have a particular interest in medical gaslighting, delayed diagnosis, and the impact of medical invalidation, so many of the discussions you facilitate feel incredibly important and meaningful.I’ve also had the privilege of presenting at several Ehlers-Danlos Society conferences, and I truly appreciate the way your podcast amplifies patient voices alongside clinical expertise. Your work is making a genuine difference to so many people in the community.I always find the discussions around MALS especially interesting, as I underwent MALS surgery myself in March 2025, so hearing these experiences and expert conversations feels particularly personal and validating.Thank you again for your passion, generosity, knowledge, and the incredible work you do through this podcast. It is such a valuable resource for the EDS and chronic illness community.

Thank you so much, Linda, and the entire podcast team. I dip in and out of the Bendy Bodies Podcast series, and so much of the content resonates deeply with me. The podcasts have not only helped me feel less alone, but have also significantly improved my understanding of how to better manage my hEDS and associated conditions, as well as navigate and access the healthcare support I need.As someone living with hEDS and complex co-occurring conditions, I especially value the depth, compassion, and expertise brought to each episode. I also work within this field professionally and am currently a postgraduate researcher focusing on how to reduce diagnostic delays for autistic people with EDS/HSD. I have a particular interest in medical gaslighting, delayed diagnosis, and the impact of medical invalidation, so many of the discussions you facilitate feel incredibly important and meaningful.I’ve also had the privilege of presenting at several Ehlers-Danlos Society conferences, and I truly appreciate the way your podcast amplifies patient voices alongside clinical expertise. Your work is making a genuine difference to so many people in the community.I always find the discussions around MALS especially interesting, as I underwent MALS surgery myself in March 2025, so hearing these experiences and expert conversations feels particularly personal and validating.Thank you again for your passion, generosity, knowledge, and the incredible work you do through this podcast. It is such a valuable resource for the EDS and chronic illness community.

Always a great listen. So informative and it helped/helps me continue to learn more about my condition. Appreciated hearing Dr. Knight and Dr. Stephens recently as one of the new patients at the UVA center!

I love the Bendy Bodies Podcast!! I am a Physical Therapist who also has hypermobile Ehlers-Danlos Syndrome (hEDS) and this podcast was recommended to me by another medical professional who also has EDS. I have learned so much from this podcast, both as a Physical Therapist and a patient who has hEDS. The information is extremely informative and covers a broad range of the issues encountered with having and/or treating patients with hypermobility. I would highly recommend this podcast to both patients and other healthcare/medical professionals, even those professions not in the physical therapy profession.

I've watched several of your videos on YouTube in the last month or so. I've related to something in each one of them. I'm 59 and was finally diagnosed with multiple dysautonomia and HSD last year although I've been sick my entire life it seems. I've been told more than once I'm a medical mystery. Well, because of you and your guests and the knowledge you share, I'm finally able to connect the dots. Thank you so much.

Wonderfully informative podcast, which has helped me learn and navigate the mysteries and care available for hEDS. There is something very special about clinicians with lived experience. Thank you Dr Bluestein!

I’ve felt like a medical mystery for decades as I’ve had test after test and seen specialist after specialist. Then I was diagnosed with CRPS in 2017 and most doctors I see blame CRPS for anything they can’t explain. My GP has always had my back, and we’ve gone through it all together. Then recently she told me she’d been listening to this podcast, Bendy Bodies, and that I was the first person she thought of. She thinks I have EDS, MCAS, & POTS. Listening to your podcasts and your guests (like Dr. Chopra), it’s like I am finally seen. I can’t thank you enough for your excellent work in sharing your valuable knowledge about EDS & more. Excellent podcast

I have felt very alone on my health journey, as I live in an area where no one really even wants to recognize hEDS, POTS, MALS or MCAST ( I also have FMD) I have nearly lost my life twice to ruptured aneurysm, spontaneous subdural Bleed and now living with pretty sure MCAST of which I feel so pushed aside because none of my Drs want to even recognize it is a thing. ….. Thank you so so so so much for all of your information. It is encouraging to know someone hears me, and so many like me.

Thank you Dr Bluestein for sharing your wealth of knowledge. After my hEDS diagnosis I found few resources or people talking about what can be done. Hearing you and your guests have made me feel less alone and help me navigate what is going on with my body.

Patients living with hypermobility, dysautonomia, and mast cell activation syndrome are some of the most complex and challenging to care for — and trustworthy, evidence-based information can be hard to find. The Bendy Bodies Podcast stands out as a reliable source of clear, up-to-date insights from clinicians, researchers, and, importantly, patients themselves who are navigating this daily battle.Led by Dr. Linda Bluestein — a physician who personally lives with hypermobility — the podcast brings a unique, compassionate, and deeply informed perspective that you won’t find elsewhere. I highly recommend it to anyone in patient care, as well as to people living with these conditions and their loved ones. This podcast is an invaluable resource and a reminder that no one in this community is alone.

I truly appreciate all you do for the Bendy community. You find the best resources and we get quality information from people who know EDS. And you have inspired me to continue my education and earn my DNP so I can provide primary care to zebras. Thank you!

Thank you so much for creating this information podcast for EDS. I have notice a few podcast stop after only 1 episode. Clinics around me have stopped their EDS clinics. My rheumatologist told me I “most likely” have it. My daughter and grandson were diagnosed a year ago. I did my research and can definitely see it in my family line. My daughter has Arnold Chiari Malformation, my grandmother had a hunch back and clubfoot. Nephews who are tall and skinny with long fingers. Brother who was able to stretch his eyelids, as children we competed on bending our fingers to our wrists, sitting with our joints in positions that look very uncomfortable to other people. I’m 54 now and am not as hyper mobile as I was in my younger years, but notice a lot of bruising, the scar tissue build up, thin skin, joints dislocating often. My pinky finger keeps dislocation while I’m typing this. I am more concerned now because I have the inappropriate tachycardia and know that my body is being flooded with cortisol. I have tendinitis in my elbow. Diagnosed with both tennis and golfer elbows. Just so much going on with my body and there are no drs around that want anything to do with it. I have been told by Pain Management that the focus to treat it is just to protect the joints and lots of physical therapy. My rheumatologist told me to get a diagnosis I need to see a geneticist. All the big hospitals around UTMB and Baylor have ended their clinics. I worked for orthopedics who say they will not manage it anymore. I’m confused on how it’s barely becoming known but at the same time medical professionals don’t want to treat it. We need more awareness and a good treatment plan. I would like to a standard diagnostic criteria, please keep your program going. The people who are finally starting to connect the dots and look into this as a cause of their symptoms and have no one around to support them and help them get answers NEED THIS PODCAST. We need answers. We need information. We need our voices heard. Thank you.

Thank you so much for all that you do. I always thought there was something wrong with me. I would for sports and school. I would get minor injuries very easily. I was always given corrective feedback for my posture or for not locking my knees. I was only given a diagnosis at the age of 56. I am now exploring what seemed like very oddallergy symptoms over the years, as well as digestive ones. Thanks to your podcast. I feel like I have the beginnings of a roadmap. As I am aging, I find that I have discomfort and joints all over my body, but now I understand why. I also have ADHD so I’m relieved to find that all of these things are somehow connected. I feel a little bit less like a zebra thanks to you. Kathryn

Thank you, Dr. Bluestein! You’ve been a huge help in navigating life.

This podcast is incredibly informative and helpful to the Hypermobile audience and beyond.The pelvic floor and Testosterone episodes were relevant and so chock full of nuggets, I had to pause several times to properly absorb it all. I love recommending this podcast to my dancer students as well as my Pilates clients alike. Thank you and keep going!

Having to navigate a new diagnosis of EDS in the UK NHS is pretty diabolical as they don’t recognise it well enough yet. I’m glad for the services provided for the symptoms but as the clinicians are not clued up, they can’t educate me as someone who has it. Bendy bodies fills that void. It provides professional advice at multiple levels, ensuring it’s technical and bough for practitioners to learn how best to navigate this condition for/with their patients, with plenty of signposting for further info and resources. However, you also provide evidence based, comprehensive information for those with the condition in laymen’s terms. Not condescending to them, but giving them an understanding of their bodies in terminology that makes sense to everyone. You step over that academic/professional pomposity that so many have, to do what most meant to, to help those who need it. Excellent podcast. Fantastic presenter. Amazing resource for the likes of me, floating in a sea of chronic illness I now understand a little better, how to navigate. 👌🦓❤️

The subject matter is relevant, the content is peer-reviewed, and the guests are reputable. Not sure you can ask for more in the EDS society! Doing a deep dive into these episodes is an effective method to really learning about how to care for your EDS, which is so much more than a bendy body as we all know. Love how this brings to light issues and relevant concerns beyond the Beighton score.

Really love the wide range of guests this podcasts hosts- it has been really valuable for gaining different perspectives and insights. The information is superbly helpful, and its so wonderful that there is a consolidated bank of information that we can look to!

I really appreciate this podcast as someone diagnosed with the trifecta!

I feel so seen! Having just received an EDS & MCAS diagnosis following a MALS diagnosis at age 37, everything I’ve been experiencing is finally starting to make sense. Thank you for educating us on why!

The Bendie Bodies Podcast has been a lifesaver in navigating complex medical challenges. The expert insights and practical tips are invaluable, empowering me to better support my loved one and advocate effectively. Thank you for creating such a thoughtful and supportive resource for the bendie community!

So grateful this podcast for EDS patients. Access to this type of information from different experts is so helpful and inspiring!

I have been a long time Bendy Bodies listener and absolutely love this podcast. It’s an amazing resource for anyone who might be struggling with hypermobility - there is something to learn in every episode. As someone managing hEDS/MCAS/POTS, I love the wide range of topics the podcast covers and the depth of information. It’s been so helpful for me! Dr. Bluestein’s solo episodes are also incredibly valuable as is her perspective as a medical professional.