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

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00:00
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 maybe 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 it 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. 

00:50
Jennifer Milner
Welcome back to the Bendy Bodies podcast, bringing you state of the art information to help you improve your well being, 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 hyper mobility related problems. Now I train dancers to ensure the next generation of hypermobile artists are better equipped to work to their fullest potential. 

01:14
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. 

01:35
Jennifer Milner
Our guests today are dr. Courtney gensimer, a postdoctoral scholar in the department of regenerative medicine and cell biology, department of neurosurgery at medical university of south carolina and victoria daler, 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. Gensimmer and Victoria. And welcome to Bendy Bodies. 

02:11
Cortney Gensemer, PhD
Hi, thank you so much for having us. 

02:14
Jennifer Milner
Absolutely. We are really glad that you are here now. Also, I've introduced Dr. Gensimmer 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. Courtney, can you share how this paper came about? 

02:48
Cortney Gensemer, PhD
Yeah, absolutely. So last summer, we had our HDS intern program in the Norris lab. So 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. And 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, were talking about a lot of different things. We even did a live stream 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. 

03:39
Cortney Gensemer, PhD
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. And she 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 and so I thought I'm going to ask Victoria if she might be interested. I had no idea what she would say. Obviously everyone ended up saying yes, but it just kind of happened like in the moment that day. And then the three of us started working on this together and it's been a really cool collaboration just 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. 

04:27
Jennifer Milner
And 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? 

04:36
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 sort of different topics and comorbidities we wanted to cover. But something that I think that 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. 

05:32
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 for them. Victoria, what surprised you most about writing this article? 

05:54
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 for you can help learn how to cope and kind of find peace of mind, which that has definitely affected my physical condition. Whenever I feel well mentally, I think specifically reading about the placebo and nocebo effect. I think everyone has heard about placebo, but nocebo was not a term I was familiar with. So it was either the prior positive or negative perception of your treatment, like medical treatment specifically, and having a positive view of your medical treatment prior to it can really impact the effect of the treatment plan. 

07:10
Victoria Daylor
And along with that, also 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. Yeah, that was what surprised me. I'm going to add one more thing, is that Linda informed me that Leftover food has higher histamine levels, and I had no idea, and I think about that every day. Now. 

07:46
Jennifer Milner
The small things that you learn that aren't necessarily what you set out to uncover, right, but that you learn 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. Gensimmer referred to that a little bit earlier. Can you explain why you guys settled on that and how that informed how. 

08:12
Cortney Gensemer, PhD
You wrote The Want? 

08:14
Dr. Linda Bluestein
As Dr. Ginsenger said, we really wanted 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, and we met multiple times over zoom and of course had multiple email threads going at different times. And I think that the big theme was that for anyone in the spectrum, whatever your diagnosis is, there is hope. And there's usually something that can be done. 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, and we wanted to include everyone, whether they have a diagnosis or not, everyone who has symptomatic joint hypermobility or a condition related to that. 

09:11
Dr. Linda Bluestein
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. 

09:20
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 either Stanlow Syndrome or HSD or Marfin or whatever it is, they may not have all the dots connected for them because they may not have a diagnosis. They may have one thing, and the article that 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. Courtney why should people read this article? 

09:57
Cortney Gensemer, PhD
I think there's several reasons. There's the patient community reading it is different than the reasons why I think it's important for the medical community to read it. I think 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 kind of 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. But 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. 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. 

10:54
Cortney Gensemer, PhD
So I think it has the ability to just sort of impact how it's viewed, and instead of viewed as something that's either benign, which it's clearly not, and we talk a lot about the comorbidities and symptoms that occur, but also that it shouldn't be diagnosed because there's no point in knowing if you can't treat it. And we also talk about ways to manage it which show that isn't true. But from a patient perspective, I think I've always kind of had the mindset of 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 maybe 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. 

11:43
Cortney Gensemer, PhD
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, or even, okay, I'm going to go try to find a knowledgeable physical therapist now because I read this article. Those types of things. 

12:05
Jennifer Milner
So this is a great article for both medical professions and the people adjacent to that, right? Like trainers, people that are feeding into the care of someone, but then also for people themselves who are suffering with joint hypermobility syndromes of some kind, some sort of symptomatic joint hypermobility. That's great because that means we're reaching a lot of people with it. So I want to move on to since we've started talking about symptomatic joint hypermobility, I want to fill that out a little bit more. I want to start with you, Victoria. Can you share three things that you want people to know about symptomatic joint hypermobility? 

12:44
Victoria Daylor
Yeah, I wish I could cover them all, but I think top three would be 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 looked 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. So that's just one example. But I think that's one thing is it can look different. I remember seeing a post on Instagram, actually. I think it was the cirque physio. They said, ignoring your hyperextension won't make it go away. 

13:55
Victoria Daylor
That really has 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. I think it's something to address, worth addressing, finding out if there's something there or not. And so I think that little quote on Instagram has really stuck with me. But it is worth it. You have to address it, I say, with kindness. 

14:39
Cortney Gensemer, PhD
Yeah. 

14:39
Victoria Daylor
I think the other thing is that it's unpredictable. I think for people who don't have hypermobility in their joints, maybe it's hard to understand that some days I'm very able to do rigorous physical activity, perform hard dance pieces. I used to lift people all the time. Now I don't do that anymore. But yeah, I used to be able to do these things. And some days I feel like I am invincible still. And then some days I'm in a lot of pain and discomfort and kind of feel the elements of what I deal with. And I think yeah, I like to be understood. I think that's a natural human thing. But for people to understand that it does look different every day, that is. 

15:33
Jennifer Milner
So helpful for people without symptomatic joint hypermobility to understand, right? 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? And so much of it depends on where you are that day. But it's also important for people with symptomatic joint hypermobility to understand that and to show themselves. Grace and adjacent to that, what you said is your second point, that it's something that you have to take care of. It's not just something that you have to take care of your hyperextension or your hypermobility. It's something that you deserve to have taken care of. So 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, right? 

16:25
Jennifer Milner
So you're investing in yourself. It's not selfish if you need to take a nap or if you need to cancel a few things. That's smart. And it's investing in your physical health so that you can do more down the line. So I love that. Those are your three things. Dr. Gensimer courtney, what about you? What three things do you want people to understand about symptomatic joint hypermobility? 

16:46
Cortney Gensemer, PhD
So 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 disorders are not rare. Some types of Dehyr Stanley syndromes are exceedingly rare conditions. But overall, as a whole, hypermobile Eds 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. This is a rare disease. It's not helpful. It delays people getting accurate diagnosis. It impacts their access to resources. And I think it also can kind of skew healthcare providers perspective on being educated about it. Because if you think it's rare, you think that you don't need to know a lot about it because you won't see it in your practice. So that would definitely be the first one. 

17:45
Cortney Gensemer, PhD
The second one is just 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. And so it's hard because it's like, what else do we call these conditions? Right? 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 kind of get lost that the gastrointestinal tract, the immune system, neurological issues, all those other things can be present. And then the third thing I think that 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 sort of a team of healthcare providers, but having an expert, someone who's maybe published in the space or sees a ton of Eds patients or hypermobile patients, isn't really necessary all the time. 

19:06
Cortney Gensemer, PhD
And that's something I want to emphasize, is that 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. And something that I often tell patients, I get questions all the time, like, do you know a doctor near here? Do you know someone near here? Who should I see? And of course, I know some great experts off the top of my head. They might have to travel for those or they might have really long wait lists. And so I always encourage people that if you can find a compassionate physician who's open to learning and listening to you, that's someone that you can take a publication like this to and say, hey, I know you've been listening to my symptoms. 

19:52
Cortney Gensemer, PhD
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? And so I think just trying to be open, I know that it can be hard to see new physicians and go through your medical history and all of those things, but if you can find someone who is willing to listen, I tend to find that younger physicians are much more open. Every sort of 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 kind of the best place for you to go if you can't find sort of an expert near you. 

20:31
Jennifer Milner
That's such great advice. And that is something that we hear all the time at Bendy Bodies. Is there's no one near me? Like, this is a medical desert. How do I find someone that I need? And we so often say finding someone who is compassionate and as you said, willing to learn and open and validating your symptoms is really crucial. I also really appreciate what you said. I think it was your second point that symptomatic joint hypermobility is not rare. And I have had so many of my own clients dismissed when they come in and talk about it. And 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. 

21:14
Cortney Gensemer, PhD
It's so rare you don't have that. 

21:16
Jennifer Milner
And she has diagnosed with Eds. And to be dismissed because, as you've said, it's so rare is incredibly frustrating. So changing that mindset will also, as you mentioned, hopefully change how much of it gets taught in schools, how many people seek out to learn more about it. So that's a huge piece of it. Dr. Bluestein, what are the three big things that you want people to know about? Symptomatic joint hypermobility. 

21:41
Dr. Linda Bluestein
I agree with Victoria. It's like picking three things is hard. And I'm glad that Courtney 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 still should be considering it, especially if somebody's not making progress with their treatment. But anyway, for my three things, the first thing that I want to mention is that improved quality of life is often possible, and we don't even need to over medicalize 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. And I often tell people that I like to use the 10% rule. So if you get 10% out of five different interventions now, you have 50% improvement. And if you intervene at an earlier time, then you can use usually less types of interventions. 

22:39
Dr. Linda Bluestein
And therapies than if you wait, the longer you wait, first of all, it becomes this tangled web that can be very difficult to untangle and sort out what caused what. And you often need to use more aggressive therapies than if you intervene at an earlier time, again, without over medicalizing. So that's my first thing that I want to point out, that improved quality of life is possible. The second thing is don't doubt yourself just because other people doubt you. I also have gaslit myself, 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. So 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. 

23:39
Dr. Linda Bluestein
Try to use a curious mindset and not anxious mindset. That can be very helpful. And trying to observe yourself like an outside reporter would, and focusing on not just awareness. 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? So when it comes to these articles, part of why I felt this was such an important these were such important papers to publish is because there are so many things that people can do, as Courtney pointed out without their physician. So taking action can make us feel so empowered and so much more hopeful than just being told there's nothing that you can do. And then the last point that I wanted to make is that especially right now, not to get too caught up on whether you have a hypermobile Eds or HSD diagnosis or some other diagnosis or no diagnosis even, because, again, we wanted to make this very inclusive, we used symptomatic joint hypermobility. 

24:42
Dr. Linda Bluestein
These steps can be taken by anybody who thinks that this might apply to them. And a lot of these things that we recommend can even beneficial for people who maybe they don't even have symptomatic joint hypermobility, but they have had pain, they've had chronic pain. And I get people sent to me all the time that they think that they might have Eds, and they don't even have generalized joint hypermobility. So it's really important for us to not get too hung up on labels, but instead to focus on symptoms. And as Courtney said, the joint hypermobility and joint related symptoms might not even be the most significant part of the person's picture. So I would try not to get too caught up on the diagnostic labels, but instead really focus on getting treatment for the symptoms that are most greatly impacting your life. 

25:31
Jennifer Milner
I cheated because you guys only felt like you had three, but I got nine points out of it, so yay for me. We got several excellent, great takeaways from that, so I really appreciate it. Courtney, what can you tell us about the future of joint hypermobility and related conditions? 

25:48
Cortney Gensemer, PhD
Yeah, so 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. I think in terms of the basic science, we're starting to catch up. If you look at publications on hypermobile conditions in the last five to ten 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. I think research is really starting to explode. There's a lot of studies going on with our lab and other labs, things looking for biomarkers, genetic markers, treatment options, clinical trials being planned, all sorts of things to manage comorbidities, to find ways to diagnose and to hopefully lead to treatment options. 

26:52
Cortney Gensemer, PhD
But the other thing I do want to mention is while the science is growing and research is going and things are moving in a good direction, one of the things that I unfortunately also see growing is a lot of the misinformation and the bad science. And when you have a condition like HSD or HEDS, this also happens in sort of the mecafs 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 it's financially or other ways. And so 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. And 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. 

27:56
Cortney Gensemer, PhD
But I'm hoping that sort of 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. And I think we're moving in that direction. I've talked with a lot of different people, students and PiS at other labs that have a lot of cool projects that they're planning on doing and I'm excited to see the papers that will come from those in the next two 3510 years. I think it's going to be really awesome. 

28:30
Jennifer Milner
Excellent. Well, that is a good hope to have. Victoria, what kind of research or publications would you like to see in this space? 

28:38
Victoria Daylor
Yeah, I think everyone has on their know what is the crossover in symptomatic joint hypermobility, pots and mast cell activation disorders. I would love to see some explanations as to why how all of that sounds like a complicated project to take on, but hopefully we'll get some answers with that. I'd also love to see clinical trials and case studies with specific treatment options related to symptomatic joint hypermobility. There is very little in regards to specific options. 

29:20
Cortney Gensemer, PhD
That's something I'd love to jump off of too. In terms of talking about comorbidities and mass 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 is kind of trying to understand that mast cell relationship. Is the connective tissue that's abnormal a trigger for mast cells or are mass cells contributing to problems in connective tissue? Is it a little bit of both? Is there something else going on? Kind of the chicken or the egg question? What is the relationship going on here? 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 mass cells work. Most of the work that's been done on mast cells has been really focused on true allergies and allergic responses. 

30:11
Cortney Gensemer, PhD
But mass cells are involved in so many other conditions and a lot of different connective tissue problems, including sort of the opposite of Eds and fibrotic conditions and things like. That. So I'm excited to be working on some of that and kind of along with the research growing, is that hopefully we can publish something right on a relationship, something we find in the lab between mass cells and Eds. And then that study opens up doors for ten other studies from other labs. And so as we start to publish in these areas, I hope that there is an explosion of additional publications after that. 

30:47
Jennifer Milner
Well, I think there's been an explosion of publications on hypermobility and Eds just within the past five years, like, relatively speaking, I feel like just starting to be something that's coming out there. Did you have anything you wanted to add and looking towards the future? 

31:01
Dr. Linda Bluestein
Yeah. 

31:01
Cortney Gensemer, PhD
One of the things that I have been saying lately, and not just related to these conditions, but just science in general, is no science is better than bad science. When you see questionable studies, often in what we call predatory journals. So journals that don't really have like a review process and things like that are just a little questionable, and then people are presenting data that doesn't even show how they collected it or doesn't show statistics or things are just missing. But to the lay public, they're like, well, this is published, this isn't a paper, and so that means it must be true. And that's really frustrating because to the lay community and to the scientific community, it's harmful if you take a bad study on Eds. Right? And so I don't even want to call it a study because if it's improperly done, it's just like a bad thing someone threw together and then physicians see that it's more invalidating to the illness, it further pushes that narrative. 

32:02
Cortney Gensemer, PhD
I mean, if someone can read it, like a scientist or physician can read it and see right through it and be like, this is terrible science, it's going to further increase that bias of like, well, the science on the disease isn't even good, so why would I take it seriously? So it's harmful for patients, it's harmful for the research community. If the people doing the research are doing bad research, then it makes other people not want to be a part of that field of research. So it's just this difficult cycle. 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. 

32:47
Cortney Gensemer, PhD
I will say we've done a lot of talks where we've basically 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. 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. 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. And so at the current moment, we don't have a secret treatment that we're waiting to publish or something. I wish I could say we did, but although it's frustrating that things aren't out there, nothing that we've done aside from providing hope and validation, obviously those are very important, but in terms of changing your medical care, it's not going to happen at this exact moment. 

33:42
Cortney Gensemer, PhD
So I just like to remind people of that. 

33:44
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, right? So that's the other thing. Obviously, 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's people out there who are saying all kinds of things that offering false hope, I think. And so it's so important to follow the science and whenever possible to really get quality, credible resources. And I think it's easier to make something sexy oh, sorry, if you're like making stuff up or you're not, 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 be as sexy. 

34:51
Dr. Linda Bluestein
So that doesn't always spread as quickly. But that's why I think it's really important for people to understand this process. And as you were explaining the steps, you kind of went over, like, the writing the paper so quickly, and to me, it's like, oh, my God, writing a paper is so much work and such an incredible amount of effort going into the resources, specifically the references. I mean, and so I think it's just incredible what you're doing, what the Norris lab is doing. And everyone owes you a huge debt of gratitude for this because it's in some ways probably thankless work because it's so much effort. 

35:32
Cortney Gensemer, PhD
I'll also throw in like, a little plug for the intern program. Victoria is a great spokesperson if she wants to say anything about being one of our interns, but 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 them next summer. Again, I don't know if Victoria wants to add anything about the intern program. 

35:50
Victoria Daylor
I would be happy, definitely. 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. Yeah. I learned so much about science, not only, but 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. And I felt incredibly empowered to learn about the condition on a cellular level and that's really intriguing to me. And meeting Dr. Bluestein and many other incredible physicians and, yeah, I can't recommend it enough, and so much so that I am joining the lab full time starting next month. So I'm moving to Charleston and going to continue researching with them and I cannot wait. 

36:58
Jennifer Milner
Oh, that's fantastic. Congratulations. Well, 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 for it to be symptomatic joint hypermobility rather than one diagnosis specifically, is really helpful for a lot of people. And as Courtney mentioned earlier, it's an opportunity as the information gets out there, it's an opportunity for people to take advantage of other people. 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 it is a quality research that has been put into it and not just sort of thrown off in a fly by night group of people looking to make a big buck. 

37:58
Cortney Gensemer, PhD
Yeah, and I'll also add, I don't know if we mentioned, but healthcare providers can get CME credits through this. So it's a really great way. If you just 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 all sorts of people 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 have around if you need it and share with your patients as well. 

38:40
Jennifer Milner
Yes, 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. 

39:03
Victoria Daylor
Yeah, I feel incredibly more hopeful after being a part of this paper and seeing, I think, reflecting on my own experience whenever I've felt my worst relate. I think I mentioned this earlier, but it can be related to feeling out of options or out of hope or not being listened to. And I hope that this paper shows you that the list is long, actually, of things that can help. I'm shocked. I have a whole new list of things to pull from and to try if I'm feeling like that. And I feel inspired to know that there are physicians out there like Dr. Bluestein that are aware of the multi systemic nature of this, but also that patients often feel gaslit and have medical trauma and the whole experience of symptomatic joint hypermobility, not just the medical experience. So, yeah, I think that taking power over your own medical treatment is the biggest takeaway of hope for me. 

40:11
Cortney Gensemer, PhD
Nice. 

40:11
Jennifer Milner
And where can people find you? 

40:13
Victoria Daylor
People can find me on Instagram at Genetically Bendy. Yeah, that's where I'm trying to spread some information, just like these lovely women on the call with me. 

40:26
Jennifer Milner
Excellent. That's great. And Dr. Ginsenberg. 

40:29
Cortney Gensemer, PhD
Courtney, what about you? Yeah, I would say one final note is just to have an open mind can be really important. I think sometimes patients can get a little burnt out. 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 naltraxone. Let me give it a shot. Maybe it'll work for me. It can be really easy to get in that mindset of like, 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. 

41:19
Cortney Gensemer, PhD
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. And it's a great opportunity to spend time with my dog. I actually walk up the steps to lab every day now, which is crazy because a few years ago, I never would have thought that I could do that. I just wouldn't have even tried. So just having an open mind about things that doesn't mean like 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 or things that you might read in this paper, maybe stop eating that leftover food. 

41:56
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, Courtney? 

42:05
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 that 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. And I've seen some friendships online kind of come from that, which is awesome. 

42:42
Jennifer Milner
That's fantastic. And Dr. Bluestein. 

42:44
Victoria Daylor
What about you? 

42:45
Dr. Linda Bluestein
I love what Courtney just said about keeping an open mind if I'm seeing a new patient, and oftentimes maybe they will have tried low dose naltrexone, but then when we start to actually really get into the details about that or some other medication, oftentimes it's how they did it. And if they have an open mind and are willing to try it again, I explained to them, well, but 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 this in a different way. And if they have an open mind and we can use that placebo effect that Courtney talked about earlier I'm sorry, Victoria talked about the placebo effect. That can really beneficial. So it is that open mindset is really important for having a better chance at having a good outcome with putting together a comprehensive treatment plan. 

43:33
Dr. Linda Bluestein
So I'm really excited about this two part article. I'm so grateful to Victoria and Courtney for just their incredible work on it's. Writing an article is so much work. I know, Jen, I've told you I'm never writing another article ever again after I wrote whatever I wrote before this. And then you're like, you're writing another article. Well, it's different though, because Victoria is going to be first author and she just did a phenomenal job making it easier for the rest of us who are participating on the team. And so 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 Courtney said, it's written in a way such that patients and healthcare professionals both can benefit. And people can find me at Instagram, Twitter, Facebook, LinkedIn, all at Hypermobility MD. 

44:26
Dr. Linda Bluestein
I think I'm also on I and I am on TikTok. Kyle manages the TikTok. I never touch don't. 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, of course, and learn more about these complex conditions that can present in such a wide variety of ways. So the saying if you've seen one Eds patient, is very, very true. So it's important not to compare and to recognize the differences. And I know Victoria had pointed that out earlier, but I just wanted to reiterate that one last time. 

45:10
Victoria Daylor
Absolutely. 

45:11
Jennifer Milner
And thank you for that, so 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, and our guests today have been Victoria Daler, Courtney Gensimer and our very own Dr. Linda Bluestein talking about hope for hypermobility. Victoria, Courtney and Dr. Bluestein, thank you so much for being here today. 

45:33
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 WW bendybodies.org and follow us on Instagram at bendybodies. We love seeing your posts and stories, so please tag using hashtag 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 Body Podcast.