Fostering Hope for Hypermobility with Cortney Gensemer, PhD, Victoria Daylor, and Linda Bluestein, MD

[00:11] Cortney Gensemer, PhD: The more knowledgeable a patient is, the better care they will receive regardless of what physicians they're seeing, because you're able to communicate what you're dealing with. You're able to understand different medical terminology, especially if you're maybe working with providers who aren't experts on EDS but are willing to listen. It helps you articulate a lot of the things that you might experience as a patient. And it also provides a lot of insight into things that you can do yourself that you don't necessarily need a physician to prescribe something or to do certain testing, but things that you can take from this article and say, okay, I'm going to try to start applying these things to my life.

[01:02] Jennifer Milner: Welcome back to the Bendy Bodies Podcast, bringing you state-of-the-art information to help you improve your wellbeing, enhance your performance, and optimize career longevity. This is co-host Jennifer Milner, a former professional ballet and Broadway dancer who struggled for years with hypermobility-related problems. Now I train dancers to ensure the next generation of hypermobile artists are better equipped to work to their fullest potential.

[01:26] Dr. Linda Bluestein: I'm Dr. Linda Bluestein, the Hypermobility MD. I started Bendy Bodies to provide accessible information about joint hypermobility. Combining my medical education and personal experiences enables me to treat and coach patients and clients to optimize their quality of life. This information is for educational purposes only and is not a substitute for medical advice.

[01:47] Jennifer Milner: Our guests today are Dr. Cortney Gensemer, a postdoctoral scholar in the Department of Regenerative Medicine and Cell Biology, Department of Neurosurgery at Medical University of South Carolina. And Victoria Daylor, researcher and student, Department of Regenerative Medicine and Cell Biology at Medical University of South Carolina and post-baccalaureate pre-medical department, School of General Studies at Columbia University. Unfortunately, co-author Dr. Norris was not able to join us today, but we will definitely be speaking with him in a future episode. So hello, Dr. Gensemer and Victoria, and welcome to Bendy Bodies.

[02:23] Victoria Daylor: Hi.

[02:23] Cortney Gensemer, PhD: Hi.

[02:24] Jennifer Milner: Thank you so much for having us. Absolutely. We are really glad that you are here. Now, I've introduced Dr. Gensemer and Victoria, but I should also say that we have another guest today, and that is our own Dr. Linda Bluestein. She is also a co-author on the paper, so she is going to be chiming in as one of the guests. We are here today to discuss a recently released two-part series of journal articles that you all wrote together along with Dr. Norris, entitled Hope for Hypermobility. So that's what we're going to dig into. Cortney, can you share how this paper came about?

[03:00] Cortney Gensemer, PhD: Yeah, absolutely. So last summer we had our hEDS intern program in the Norris Lab. This is an intern program for people with EDS to actually come into the lab and study it, be a part of research discoveries, with the ultimate goal of helping further their career, whether it's research or graduate school, medical school, something like that. And as part of our intern program, we have external people come and visit, meet our interns. These are people who are experts in the EDS field.
[03:30] So last summer, Victoria was one of our interns, and Dr. Bluestein was one of our guests who came to visit. And while she was here in Charleston, we were talking about a lot of different things. We even did a livestream together. But she mentioned that she was going to be working on this paper and wanted to see if it's something that I would be interested in. She had read papers that I had written before and thought it would be a good opportunity for us to kind of work together — merge her awesome clinical ideas with some of my interest in writing and science communication and things like that.
[04:02] And she said, you know, if you have an intern also who might be interested, I think this would be a great opportunity to get them involved. And Victoria immediately stuck out to me. I had no idea what she would say. Obviously, everyone ended up saying yes. But it just kind of happened in the moment that day. And then the three of us started working on this together, and it's been a really cool collaboration — having us in all different places all over the country, at different universities and practices and all different things, being able to work together on something.

[04:39] Jennifer Milner: Did you have a main idea that you wanted to dig into for this article series, or did you just wait to see what direction it went? How did that go?

[04:48] Cortney Gensemer, PhD: So we knew it was going to be focused on pain and pain management, being in a pain journal, and with Dr. Bluestein's background in anesthesiology. But we didn't know exactly what it would include. And so there was a lot of brainstorming initially. I think we had a lot of different ideas. We talked about case studies, we talked about different topics and comorbidities we wanted to cover.
[05:11] But something that I think was really cool and that Dr. Bluestein really pushed for was making sure it was encompassing to sort of all hypermobile conditions, or all symptomatic joint hypermobility. And so that's why we use the term symptomatic joint hypermobility rather than specifically hEDS or HSD or just EDS in general, so that it really encompasses anyone dealing with joint hypermobility that is symptomatic, regardless of what their diagnosis is or if they even have a diagnosis.

[05:43] Jennifer Milner: Well, that's great that you started big, threw all the ideas into the pot, and then sort of started winnowing it down but still kept this overall umbrella of wanting to include as many different subcategories as you could, which is really helpful because, as you said, whether they have a diagnosis or not, this can definitely apply to them. Victoria, what surprised you most about writing this article?

[06:05] Victoria Daylor: Great question. I was learning a lot along the way in my research and reading other papers published about the topics that we covered. I think the biggest thing I was surprised about in writing it was the effectiveness of patient education. Being a patient and hoping to help educate people, it's good to see where they cross over and just the proof and the evidence behind it to back the idea. It's a simple idea, but knowing more about your condition and options available to you can help you learn how to cope and find peace of mind, which has definitely affected my physical condition — whenever I feel well mentally, I notice the difference.
[06:49] I think specifically reading about the placebo and nocebo effect was eye-opening. I think everyone has heard about placebo, but nocebo was not a term I was familiar with. It's either the prior positive or negative perception of your treatment — medical treatment specifically — and having a positive view of your medical treatment prior to it can really impact the effect of the treatment plan. Along with that, having a positive relationship with your physician has been proven to improve and enhance your condition and symptoms of illness, which as someone who's hoping to be a physician one day, I'm trying to incorporate that mindset as soon as possible and see it in real time.
[07:38] That was what surprised me the most. I'm going to add one more thing: Linda informed me that leftover food has higher histamine levels, and I had no idea. I think about that every day now.

[07:58] Jennifer Milner: The small things that you learned that aren't necessarily what you set out to uncover, but that you learned that kind of stick with you — that's the joy of working in a group. So coming to you, Dr. Bluestein, you specifically use the term symptomatic joint hypermobility in this article, and Dr. Gensemer referred to that a little bit earlier. Can you explain why you guys settled on that and what that informed about how you wrote the articles?

[08:24] Dr. Linda Bluestein: We really wanted, as Dr. Gensemer said, to be as inclusive as possible. And there are so many people who feel like there's no hope. So we also spent a lot of time really thinking about the title of this article and brainstorming ideas. We met multiple times over Zoom and of course had multiple email threads going at different times. And I think the big theme was that for anyone in the spectrum, whatever your diagnosis is, there is hope. There's usually something that can be done.
[08:58] And oftentimes you don't even need a medical professional to help you with that — but there's something that can be done to help improve your quality of life. So the title of the article, Hope for Hypermobility, was very specifically chosen. We wanted to include everyone whether they have a diagnosis or not. Everyone who has symptomatic joint hypermobility or a condition related to that — we wanted to help them, give them some ideas, and give them some tools to help their functional capacity be the best that it can possibly be.

[09:32] Jennifer Milner: That's fantastic. And again, having that larger umbrella so that as many people as possible can be reached, because as we know, when people are struggling with hypermobility disorders — whether it's Ehlers-Danlos syndrome or HSD or Marfan or whatever it is — they may not have all the dots connected for them. They may not have a diagnosis. They may have one thing and the article they're reading is talking about another thing, so they may not feel like it applies to them, or the medical professionals working with them may not feel that it applies to them. So I think that is super helpful for a lot of people to have that broad umbrella. Cortney, why should people read this article?

[10:09] Cortney Gensemer, PhD: I think there are several reasons, and the patient community reading it has different reasons than the medical community. For physicians and healthcare providers, it's really important because there tends to be this connotation of like, don't diagnose EDS, or it doesn't matter if someone has it because there's no treatment and there's nothing you can do. And I think that goes along with the title of Hope for Hypermobility. Even if there's not an FDA-approved magic treatment, or therapeutics that have been designed for EDS — which hopefully there will be in the future — even if we don't have those things right now, it can be managed. And I think we need to change that mindset in healthcare. I think it's going to improve the quality of life for a lot of patients.
[10:51] It's also going to potentially shorten those delays in diagnosis or the misdiagnosis that might go on because it's viewed as something that doesn't matter if you diagnose it. So I think it has the ability to impact how it's viewed — instead of being viewed as something that's either benign (which it's clearly not, and we talk a lot about the comorbidities and symptoms that occur) or as something that shouldn't be diagnosed because there's no point in knowing if you can't treat it. We also talk about ways to manage it, which shows that that isn't true.
[11:27] From a patient perspective, I've always had the mindset that the more knowledgeable a patient is, the better care they will receive regardless of what physicians they're seeing. Because you're able to communicate what you're dealing with, you're able to understand different medical terminology, especially if you're working with providers who aren't experts on EDS but are willing to listen. It helps you articulate a lot of the things that you might experience as a patient, and it also provides a lot of insight into things that you can do yourself — things you can take from this article and say, okay, I'm going to try to start applying these things to my life, or even, okay, I'm going to go try to find a knowledgeable physical therapist now because I read this article.

[12:17] Jennifer Milner: So this is a great article for both medical professionals and the people adjacent to that — trainers, people that are feeding into the care of someone — but then also for people themselves who are dealing with symptomatic joint hypermobility of some kind. That means we're reaching a lot of people with it. I want to move on — since we've started talking about symptomatic joint hypermobility, I want to fill that out a little bit more. Victoria, can you share 3 things that you want people to know about symptomatic joint hypermobility?

[12:55] Victoria Daylor: Yeah, I wish I could cover them all, but I think my top 3 would be: first, that it looks different on everyone. I come from a dance background and I heard about hyperextended knees and how they were both sought after for their beautiful lines but also problematic. And I look down at my knees and my knees barely straighten, but yet almost every other joint in my body is hypermobile. So I thought, oh, that's not me, I don't have hypermobile knees. But I later found out that yes, your shoulders, elbows, wrists, jaw can also be hypermobile, and it's going to look different on everybody depending on the joint and many other factors.
[13:50] I remember seeing a post on Instagram from, I think it was the Cirque Physio. They said, "Ignoring your hyperextension won't make it go away." And that has really stuck with me. I feel like with all my friends in dance, I'm like, if you have this, it's important that you assess it, have it assessed, you handle it, be aware of it. There are ways to prevent further injury. It can be more systemic. It's something worth addressing — finding out if there's something there or not. I think that little quote on Instagram has really stuck with me. You have to address it, I say, with kindness.
[14:51] The other thing is that it's unpredictable. For people who don't have hypermobility in their joints, it may be hard to understand that some days I'm very able to do rigorous physical activity — perform hard dance pieces, lift people. I used to lift people all the time. Some days I feel like I am invincible still. And then some days I'm in a lot of pain and discomfort. I just hope for people to understand that it does look different every day.

[15:42] Jennifer Milner: That is so helpful for people without symptomatic joint hypermobility to understand, because you might cancel going out with a friend to their birthday party one night because it's been a really bad day, and then a week later you might go to karaoke night with other friends, and that first friend is like, well, how come you could do this and not that? So much of it depends on where you are that day.
[16:05] But it's also important for people with symptomatic joint hypermobility to understand that and to show themselves grace. Adjacent to what you said in your second point — that it's something you have to take care of — it's not just something you have to take care of, it's something you deserve to have taken care of. You're absolutely worth investing the time and effort of the maintenance that you can do on the good days to help you not feel as bad on the bad days. You're investing in yourself. It's not selfish if you need to take a nap or cancel a few things — that's smart. It's investing in your physical health so that you can do more down the line. I love that those are your 3 things. Dr. Gensemer, Cortney, what about you? What 3 things do you want people to understand about symptomatic joint hypermobility?

[16:58] Cortney Gensemer, PhD: The first thing is really simple and something that I feel like a lot of the community has been pushing, but it's not fully accepted or known yet: it's not rare. Symptomatic joint hypermobility, hypermobility disorders are not rare. Some types of the Ehlers-Danlos syndromes are exceedingly rare conditions. But overall, as a whole, hypermobile EDS and hypermobility spectrum disorders are not rare. And treating them as rare also contributes to the dismissal of symptoms — doctors saying, you can't have that, it's too rare. It delays people getting accurate diagnosis. It impacts their access to resources. I think it can also skew healthcare providers' perspective on being educated about it, because if you think it's rare, you think you don't need to know a lot about it because you won't see it in your practice.
[23:17] The second thing is really emphasizing that comorbidities and things that come with symptomatic joint hypermobility extend far beyond joints. The whole body essentially can be affected. That can look different for everyone, and for a lot of patients, their joints are actually not their biggest issue. It's hard because, like, what else do we call these conditions? The unifying feature is that people have hypermobility, but hypermobility isn't always the biggest issue. And sometimes I worry that when we talk about joint hypermobility and hypermobile conditions, it can get lost that the gastrointestinal tract, the immune system, neurological issues — all those other things can be present.
[23:17] The third thing I'd really like people to know is that a lot of resources can be challenging to find — finding a physician who understands it, finding someone who lives near you who understands it, assembling a team of healthcare providers. But having an expert, someone who's maybe published in the space or sees a ton of EDS patients, isn't really necessary all the time. If you can find a provider who is open to learning, who validates your symptoms, who understands that you are struggling and isn't dismissive and is willing to learn, that might be the best physician for you.
[23:17] Something I often tell patients — I get questions all the time like, do you know a doctor near here? Who should I see? — I always encourage people that if you can find a compassionate physician who's open to learning and listening to you, that's someone you can take a publication like this to and say, hey, I know you've been listening to my symptoms, you're not really an expert in this, but you're willing to help me — would you take a look at this and work with me on trying this approach? I tend to find that younger physicians are much more open. Every resident that I've interacted with here at MUSC is curious and interested and wants to learn this stuff. So someone who's young and excited and interested in learning might be the best place for you to go if you can't find an expert near you.

[23:17] Jennifer Milner: That's such great advice, and that is something that we hear all the time at Bendy Bodies — there's no one near me, this is a medical desert, how do I find someone? And we so often say finding someone who is compassionate and, as you said, willing to learn and open and validating of your symptoms is really crucial. I also really appreciate what you said — I think it was your first point — that symptomatic joint hypermobility is not rare. I have had so many of my own clients dismissed when they come in and talk about it. One of my clients wanted to be scanned for a few things neck-wise, a Chiari malformation, that sort of thing, and the doctor wouldn't even order it. He's like, oh, you don't have that, it's so rare. And she has a diagnosis of EDS. To be dismissed because, as you've said, it's so rare is incredibly frustrating. So changing that mindset will hopefully also change how much of it gets taught in schools, how many people seek out to learn more about it. Dr. Bluestein, what are the 3 big things that you want people to know about symptomatic joint hypermobility?

[23:17] Dr. Linda Bluestein: I agree with Victoria — picking 3 things is hard. And I'm glad that Cortney commented about these conditions not being rare. It's unfortunate that we tend to think that if something's rare, we're never going to see it. So even if something is rare, we should still be considering it, especially if somebody's not making progress with their treatment.
[23:17] But for my 3 things: the first is that improved quality of life is often possible, and we don't even need to overmedicalize the situation. That is not the goal. If I'm working with somebody, it's doing the least amount of intervention to get the greatest impact. I often tell people that I like to use the 10% rule: if you get 10% out of 5 different interventions, now you have 50% improvement. And if you intervene at an earlier time, you can usually use fewer types of interventions and therapies than if you wait. The longer you wait, it becomes this tangled web that can be very difficult to untangle and sort out what caused what. You also often need to use more aggressive therapies than if you intervene earlier — again, without overmedicalizing. So that's my first thing: improved quality of life is possible.
[23:17] The second thing is don't doubt yourself just because other people doubt you. I have gaslit myself too, and I think this is a common thing. We go into the doctor and they dismiss us and make us feel badly because we're reporting symptoms that to them don't make sense. And so we end up doubting ourselves. Just because somebody else doubts you doesn't mean that you should, or that it's beneficial to doubt yourself. You want to pay attention to your body, try to use a curious mindset and not an anxious mindset — that can be very helpful. Try to observe yourself like an outside reporter would, and focus not just on awareness. You know, this is EDS Awareness Month right now, but we really want to focus on action. What are the action items that you can do to help yourself feel better?
[24:12] Part of why I felt these were such important papers to publish is because there are so many things that people can do, as Cortney pointed out, without their physician. Taking action can make us feel so empowered and so much more hopeful than just being told there's nothing you can do.
[24:32] And then the last point is that especially right now, don't get too caught up on whether you have a hypermobile EDS or HSD diagnosis or some other diagnosis or no diagnosis. We used symptomatic joint hypermobility to be very inclusive. These steps can be taken by anybody who thinks this might apply to them. And a lot of what we recommend can even be beneficial for people who maybe don't even have symptomatic joint hypermobility but have had chronic pain. I get people sent to me all the time who think they might have EDS and they don't even have generalized joint hypermobility. So it's really important not to get too hung up on labels, but instead to focus on symptoms. And as Cortney said, the joint hypermobility and joint-related symptoms might not even be the most significant part of the person's picture. I would try not to get too caught up on diagnostic labels, but instead really focus on getting treatment for the symptoms that are most greatly impacting your life.

[25:43] Jennifer Milner: I cheated because you guys only felt like you had 3, but I got 9 points out of it — so yay for me. We got several excellent takeaways from that. I really appreciate it. Cortney, what can you tell us about the future of joint hypermobility and related conditions?

[26:00] Cortney Gensemer, PhD: Most of you probably know that I am continuing to work on research in this space. I did finish my PhD where my studies were focused on genetics of hEDS. I'm still working on that during my postdoc right now, and I've spoken with a lot of other people working in this space. In terms of the basic science, we're starting to catch up. If you look at publications on hypermobile conditions in the last 5 to 10 years clinically, they've been on an exponential growth. But in terms of genetics and biology and molecular diagnostics and things like that, we're not quite in that growth phase yet — but I think we're just getting into it. Research is really starting to explode. There are a lot of studies going on with our lab and other labs — things looking for biomarkers, genetic markers, treatment options, clinical trials being planned — to manage comorbidities, to find ways to diagnose, and to hopefully lead to treatment options.
[27:04] But the other thing I want to mention is that while the science is growing and things are moving in a good direction, one of the things I unfortunately also see growing is a lot of the misinformation and the bad science. When you have a condition like HSD or hEDS — and this also happens in the ME/CFS community or the fibromyalgia community — when you have something that medicine doesn't understand, unfortunately there will be healthcare providers who use that as an opportunity to benefit themselves, whether financially or otherwise. They know that patients are desperately looking for answers, and if they can say, hey, I can sell you this or I can offer this unproven thing, patients want answers and they want help and they kind of jump on board because this person is validating and listening.
[27:59] I think as we start to improve awareness, it also increases the number of people trying to take advantage of this population, which has become extremely frustrating. But I'm hoping that the scientists and physicians and researchers working on these things are going to eventually outweigh that noise, which is why it's really important that we do grow the number of publications on the basic science side of things. I've talked with a lot of different people — students and PIs at other labs — who have a lot of cool projects they're planning on doing, and I'm excited to see the papers that will come from those in the next 2, 3, 5, 10 years. I think it's going to be really awesome.

[28:42] Jennifer Milner: Excellent. That is a good hope to have. Victoria, what kind of research or publications would you like to see in this space?

[28:50] Victoria Daylor: I think everyone has on their mind the crossover in symptomatic joint hypermobility, POTS, and mast cell activation disorders. I would love to see some explanations as to why and how all of that connects. Sounds like a complicated project to take on, but hopefully we'll get some answers. I'd also love to see clinical trials and case studies with specific treatment options related to symptomatic joint hypermobility — there's very little in regards to specific options.

[29:31] Cortney Gensemer, PhD: That's something I'd love to jump off of too, in terms of talking about comorbidities and mast cell issues. That's something I'm personally really interested in and going to be focusing some of my work on over the next few years — trying to understand that mast cell relationship. Is the connective tissue that's abnormal a trigger for mast cells, or are mast cells contributing to problems in connective tissue? Is it a little bit of both? Is there something else going on? The chicken or the egg question. I think that'll give us a lot of answers, not just about the relationship between the two, but a lot of new insight into connective tissue biology and how mast cells work.
[30:16] Most of the work that's been done on mast cells has been really focused on true allergies and allergic responses. But mast cells are involved in so many other conditions and a lot of different connective tissue problems, including the opposite of EDS — fibrotic conditions and things like that. I'm excited to be working on some of that. And hopefully as we start to publish in these areas, it opens doors for 10 other studies from other labs. As we start to publish, I hope there is an explosion of additional publications after that.

[30:59] Jennifer Milner: I think there has been an explosion of publications on hypermobility and EDS just within the last 5 years, relatively speaking. It's just starting to come out there. Did you have anything you wanted to add looking towards the future?

[31:12] Cortney Gensemer, PhD: Yeah. One of the things that I have been saying lately — and not just related to these conditions, but science in general — is that no science is better than bad science. When you see questionable studies, often in what we call predatory journals — journals that don't really have a review process, that are just a little questionable — people are presenting data that doesn't even show how they collected it, doesn't show statistics, things are just missing. But to the lay public, they think, well, this is published, this is in a paper, so it must be true. And that's really frustrating because to the lay community and to the scientific community, it's harmful.
[31:56] If you take a bad study on EDS — and I don't even want to call it a study because if it's improperly done, it's just a bad thing someone threw together — and then physicians see that, it's more invalidating to the illness. It further pushes that narrative. A scientist or physician can read it and see right through it and be like, this is terrible science, and it's going to further increase that bias of, well, the science on the disease isn't even good, so why would I take it seriously? It's harmful for patients, and it's harmful for the research community. If the people doing the research are doing bad research, it makes other people not want to be a part of that field. So it's just a difficult cycle.
[32:38] The peer review process is extremely frustrating. Academic research is frustrating and has a lot of things that could be improved, but there are reasons for why things work the way they do. And although I know a lot of people are really eager to read about what we're working on, I hope that we can have it published soon. I will say we've done a lot of talks where we've shown so much data except for the gene name — we've been really transparent about all the biology we're doing, what types of experiments we're doing.
[33:10] At the end of the day, the genetics that we have found so far will not change anyone's care. It's currently not on a panel, and it will take a while for that to happen. If you have a diagnosis already, it's not going to change anything for you. If you get tested and don't have this mutation, your diagnosis is not going to go away. So at the current moment, we don't have a secret treatment that we're waiting to publish — I wish I could say we did. Although it's frustrating that things aren't out there, nothing that we've done — aside from providing hope and validation, which are obviously very important — will change your medical care at this exact moment. I just like to remind people of that.

[33:56] Dr. Linda Bluestein: I'm so glad that you shared all that because I think it's so important for people to understand the differences between high-quality, genuine scientific research that is being done properly versus people who throw things out there and basically share all kinds of misinformation. And if it sounds too good to be true, it probably is. We spent a lot of time and energy researching some of these different therapies, and you always have to weigh the risks and the benefits. But there are people out there offering false hope, and so it's so important to follow the science and whenever possible to really seek out quality, credible resources.
[34:45] I think it's easier to make something flashy if you're making stuff up, whereas if you're really sticking to the facts and sticking to your scientific research, that's harder and it's not going to necessarily spread as quickly. But that's why it's really important for people to understand this process. And as you were explaining the steps, you kind of went over writing the paper so quickly — and to me it's like, oh my God, writing a paper is so much work. Such an incredible amount of effort goes into the references alone. I think it's just incredible what you're doing, what the Norris Lab is doing. Everyone owes you a huge debt of gratitude for this, because in some ways it's probably thankless work given how much effort it requires.

[35:43] Cortney Gensemer, PhD: I'll also throw in a little plug for the intern program. Victoria is a great spokesperson if she wants to say anything about being one of our interns. We host it every year. We've already picked our interns for the summer, but if there's anyone interested in being an intern, we will be taking applications again next summer. I don't know if Victoria wants to add anything about the —

[36:01] Victoria Daylor: Yeah, I would be happy to. I've had these moments in my life looking back that have changed the course of my life, and that was definitely a big one. I learned so much — not only about science, but about the disorder, and meeting other people with the disorder for the first time, and being in a really supportive community and workplace. My mind has changed about what a workplace can look like based on how it's run there. I felt incredibly empowered to learn about the condition on a cellular level. That's really intriguing to me. And meeting Dr. Bluestein and many other incredible physicians — I can't recommend it enough. And so much so that I am joining the lab full-time starting next month. I'm moving to Charleston and going to continue researching with them, and I cannot wait.

[37:10] Jennifer Milner: Oh, that's fantastic. Congratulations. I think the thoroughness with which everybody — the three of you and Dr. Norris — have put together these articles, this two-part series, and the research that went into it, and the thoughtfulness behind choosing to use symptomatic joint hypermobility rather than one specific diagnosis, is really helpful for a lot of people. And as Cortney mentioned earlier, as the information gets out there, it's an opportunity for people to take advantage of others. So we are hopeful that the science will catch up and make this even more widespread so people won't be taken advantage of. This is a great example of something that people can take to their healthcare providers because quality research has been put into it.

[38:10] Cortney Gensemer, PhD: Yeah, and I'll also add — I don't know if we mentioned it — but healthcare providers can get CME credits through this. It's a really great way, if you have any people in healthcare in your life that you think should learn more about EDS, they probably need some CME credits. So you can send this their way. I think it would be great for all sorts of physicians and PAs and other providers to get this knowledge, even if they're in a specialty where they think they don't see a lot of these patients. It's easy to digest for both physicians and patients, and it's a helpful tool that you can share with your patients as well.

[38:51] Jennifer Milner: Yep. And as we've learned, this is not rare. So it's good for people to have this information. Was there anything else? I feel more hopeful about hypermobility and about people being able to take autonomy and these steps that you guys have given us. Was there anything else that you wanted to add? And where can people learn more about you? Victoria, I'm going to start with you.

[39:15] Victoria Daylor: I feel incredibly more hopeful after being a part of this paper. Reflecting on my own experience, whenever I've felt my worst physically, I think it can be related to feeling out of options, or out of hope, or not being listened to. I hope that this paper shows you that the list is actually long of things that can help. I have a whole new list of things to pull from and to try. And I feel inspired to know that there are physicians out there like Dr. Bluestein who are aware of the multi-systemic nature of this, but also aware that patients often feel gaslit and have medical trauma — the whole experience of symptomatic joint hypermobility, not just the medical experience. Taking power over your own medical treatment is the biggest takeaway of hope for me.

[40:22] Jennifer Milner: Nice. And where can people find you?

[40:23] Victoria Daylor: People can find me on Instagram at @genetically_bendy. That's where I'm trying to spread some information, just like these lovely women on the call with me.

[40:38] Jennifer Milner: Excellent. That's great. And Dr. Gensemer, Cortney, what about you?

[40:38] Cortney Gensemer, PhD: One final note: having an open mind can be really important. I think sometimes patients can get a little burnt out — you know, tried physical therapy for years, nothing's getting better. But having an open mind to working with new providers, maybe trying that new physical therapist that people are saying they really like in your local EDS support group, even if you've had a bad experience in the past. Being open to trying maybe a medication that you don't think is going to work because no other pain med has worked for you, but saying, okay, everyone's talking about low-dose naltrexone — let me give it a shot.
[41:19] It can be really easy to get into that mindset of nothing's working, nothing's helping. But I've definitely found things that maybe didn't work in the past and work for me much better now. I used to have a lot of trouble walking long distances, and now the best way that I feel good is going for regular walks. It's a great opportunity to spend time with my dog. I actually walk up the steps to the lab every day now, which is crazy because a few years ago I never would have thought that I could do that. So just having an open mind about things — and that doesn't mean doing ridiculous things that are going to be damaging to your body — but having an open mind about new resources and things that can be helpful. Things that you might read in this paper. Maybe stop eating that leftover food.

[42:08] Jennifer Milner: The things you learn when you're working with other people who have really interesting little tidbits of expert information. And where can people find you, Cortney?

[42:17] Cortney Gensemer, PhD: I'm on Instagram, Twitter, and TikTok at Court Does Science — C-O-R-T Does Science. Not as active on TikTok, but definitely Instagram and Twitter. And I also have a subscriber channel on Instagram — if you want to subscribe, I can't possibly interact with everyone who messages me, but I do make anyone who's a subscriber a priority and host subscriber group chats and things like that to allow people who follow me to connect with each other, which is really cool. I've seen some friendships kind of come from that online, which is awesome.

[42:53] Jennifer Milner: That's fantastic. And Dr. Bluestein, what about you?

[42:57] Dr. Linda Bluestein: I love what Cortney just said about keeping an open mind. If I'm seeing a new patient and they will have tried low-dose naltrexone, when we start to really get into the details about that or some other medication, oftentimes it's about how they did it. If they have an open mind and are willing to try it again, I can explain to them, well, you did it for only a month, or once you got to the peak dose you pretty much stopped — so we really want to try this again, and this is why we need to try it in a different way. And if they have an open mind and we can use that placebo effect — I'm sorry, Victoria talked about the placebo effect — that can really be beneficial. That open mindset is really, really important for having a better chance at a good outcome when putting together a comprehensive treatment plan.
[43:44] So I'm really, really excited about this two-part article. I'm so grateful to Victoria and Cortney for their incredible work on this. Writing an article is so much work. I know, Jen, I've told you I'm never writing another article ever again after the last one. And then here I am, writing another article. But it's different because Victoria was first author, and she did a phenomenal job making it easier for the rest of us participating on the team. I just want to say thank you to them for making this happen, because I think it is a very important two-part series for people to have access to. As Cortney said, it's written in a way such that both patients and healthcare professionals can benefit.
[44:31] People can find me on Instagram, Twitter, Facebook, and LinkedIn, all at @hypermobilitymd. I think I'm also on Pinterest. And I am on TikTok — Kyle manages the TikTok, I never touch it, I don't know what happens over there. But I am on a lot of platforms. And then hypermobilitymd.com or bendybodies.org are the best places to reach me online and learn more about the podcast and about these complex conditions that can present in such a wide variety of ways. The saying, if you've seen one EDS patient, you've seen one EDS patient, is very, very true. It's important not to compare and to recognize the differences. Victoria had pointed that out earlier, but I just wanted to reiterate that one last time.

[45:22] Jennifer Milner: Absolutely. And thank you for that. We will also have how to get in contact with everybody in the show notes as well. You have been listening to Bendy Bodies with the Hypermobility MD. Our guests today have been Victoria Daylor, Cortney Gensemer, and our very own Dr. Linda Bluestein, talking about Hope for Hypermobility. Victoria, Cortney, and Dr. Bluestein, thank you so much for being here today.

[45:45] Dr. Linda Bluestein: If you found this helpful, follow the Bendy Bodies podcast to avoid missing future episodes. Please leave a review and share the podcast so more people know about Bendy Bodies and joint hypermobility. Screenshot this episode, tagging us in your story so we can connect. Our website is www.bendybodies.org and follow us on Instagram at @bendy_bodies. We love seeing your posts and stories, so please tag us using #bendybuddy. This information is not intended to diagnose, treat, cure, or prevent any disease. The information shared is for educational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please refer to your local qualified health practitioner for any medical concerns. We'll catch you next time on the Bendy Bodies Podcast.