53. Creating a New Hypermobility Screening Tool with Aiko Callahan, DPT, and Stephanie Greenspan, DPT

Episodes have been transcribed to improve the accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us at info@bendybodies.org

00:00
Aiko Callahan, DPT
When you look at sort of the very traditional approaches to PT, do three sets of ten of these five exercises every other day. We've all heard some of this in the past. If you just throw someone into that, you have the potential to do more harm than good, because you haven't necessarily looked at neuromuscular control. You might be dealing with someone who has limited proprioception, and you're going to see a lot of compensatory patterns that are really common in hypermobility. So if you get someone going on an exercise program and you haven't addressed those issues, you can really run into some trouble, and you can really limit progression. 

00:51
Jennifer Milner
Welcome back to the Bendy Bodies podcast, where we strive to improve well being, enhance performance, and optimize career longevity for every bendy body. This is co host Jennifer Milner, here with the hypermobility MD linda Bluestein. 

01:05
Dr. Linda Bluestein
We are so glad you are here to learn tips for living your best bendy life. This information is for educational purposes only and is not a substitute for medical advice. 

01:15
Jennifer Milner
Our guests today are DRS. Iko Callahan and Stephanie Greenspan, who are both physical therapists who specialize in working with aesthetic athletes, and our co authors, along with Dr. Annie Squires of Management of Hypermobility and aesthetic performing artists. A review. So hello and welcome to Bendy Bodies. 

01:34
Stephanie Greenspan, DPT
Thank you for having us. 

01:36
Aiko Callahan, DPT
Hi, thanks for having us. 

01:38
Dr. Linda Bluestein
We're thrilled that you're here. 

01:39
Stephanie Greenspan, DPT
Yes, we are. 

01:41
Jennifer Milner
So before we dive into this article and talk about sort of your findings, could you tell us a bit about yourself? Sure. 

01:48
Stephanie Greenspan, DPT
I got into performing arts kind of later in life, so I was a physical therapist first before I started dancing mostly contemporary jazz, hip hop, and then grew into the circus world when I found you could dance in the air. So started training as an aerialist and then ended up coaching as well. And for a long time, I kept the two worlds separate. I wanted to have my art world and my work world. But then when I got into academia and there was a push to do research, I decided to blend the two worlds and started looking into research, specifically in the circus arts, looking at injury surveillance in the circus arts, as well. 

02:34
Aiko Callahan, DPT
As come from I think I was a dancer first and then a physical therapist. You know, just to echo what Stephanie said, it really is a joy to be able to blend those two things. You know, I was in ballet since I was very young and sustained a low back injury when I was in high school, and so had an interesting experience with two different physical therapists who treated me very differently. So that really sort of piqued my interest in physical, you know, luckily, I was able to still continue doing some dance in college and really focused more on learning different types of dance. So it was really neat to be able to kind of have those two things. But like Stephanie said, those two worlds have usually been sort of separate. So being able to blend those two things in practice is really a lot of fun. 

03:24
Aiko Callahan, DPT
And, yeah, I would say I sort of started out with an interest in treating dancers, but then I had physicians starting to refer patients to me for hypermobility. They're like, well, you treat dancers, so you probably understand hypermobility as well. And that's kind of how I got into seeing more people who have hypermobile Eds and hypermobility spectrum disorders because there was sort of that sense of like, well, who's treating hypermobility? And I guess as a dance PT, you sort of are sort of the default. But then by reading into the amazing body of literature that's just been expanding when it comes to Eds and hypermobility spectrum disorders, I've been able to kind of improve that depth of knowledge and really kind of coming back to see how that might apply to the artistic population. 

04:17
Stephanie Greenspan, DPT
That's great. 

04:18
Jennifer Milner
As everybody can see, there's no one path to get here, right? Unfortunately, there's no hypermobility degree that you. 

04:27
Stephanie Greenspan, DPT
Can go out and get. 

04:28
Jennifer Milner
But so much of our life experience is so valuable when we're trying to move forward. And were talking about this before the podcast to be able to take whatever you've had to deal with and be able to apply it and use it to help the next generation. So for all of you artists and athletes out there, consider your next career moving forward and helping us with this. So we are going to be talking about a review article that you wrote. First of all, give us a little information on why you wrote the article, and then we're going to dig into what exactly we're talking about here. 

05:01
Stephanie Greenspan, DPT
Sure, I'll talk about that. Annie and Iko, annie's, our other co author, had been seeing a lot of patients with Eds, and we had started having some discussions about doing a research study, looking at some physical therapy interventions related to Eds. And as part of that process, Annie and Iko had started looking into the literature and what was out there. And around the same time, I was putting together this special edition on circus arts and trying to collect authors for that. And we needed one more paper. And I actually happened to be listening to the Bendy Bodies podcast. And I was like, well, duh. That would be a great topic. And so I reached out to Annie and Iko, and I was like, what do you think about writing a review paper and using all that searching the literature that you've done and specific to aesthetic performing artists with a focus on dance and circus? 

05:58
Stephanie Greenspan, DPT
And they were totally game. And so we got to work on it, and it was really fun to work together. And I think we all deepened our knowledge because we read a lot of papers doing it. And so we all brought our different backgrounds to it. We all work with a little bit different populations, but in looking through all the literature, really deepened all of our knowledge around it as well. 

06:22
Dr. Linda Bluestein
That makes sense. And you had a great table in your article where you talked about some things that were really specific to the aesthetic performing artist that I thought were really helpful and maybe would beneficial for our listeners to hear about. For example, when you talk about the artist's identity and participation and habitual postures and some of those things, would you be able to talk a little bit about that table, one that you have in your article? 

06:49
Aiko Callahan, DPT
Certainly, yes, I'd be happy to go over that table. I'd say that there are a number of specific considerations that we have to think about with hypermobile performing artists. And I'd say that most clinicians who treat performing artists know to ask certain questions about the specifics of a performer's practice, like the type of dance, rehearsal hours, performance hours, cross training, et cetera. But I feel like the added layer of hypermobility really does make certain pieces of information even more important to understand because of how they can affect the recovery of a hypermobile performing artist. So a few specific considerations. So you mentioned artist identity. So I think that's a question we have to ask the artist. Is your identity tied to hypermobility? Is that sort of an integral part of who you are as a performer? Are they wanting to be cast specifically for these more bendy roles? 

07:45
Aiko Callahan, DPT
Is that what they're known for? So, like you were saying, as clinicians, when we look at these movements, we tend to focus on the fact that repetition into extreme range of motion might increase risk of injury. But on the flip side, the artist who sees their range of motion as sort of their primary competitive asset, for example, might be worried about missing opportunities if they don't capitalize on that hypermobility. So sometimes it can be really important to have a conversation about this and what the artist's feelings and attitudes are about this so that you're on the same page and have the same goals. Because if as a clinician, you're saying, I remember talking to a physical therapist as a dancer and saying, well, I need to get my leg up here, and they were like, well, just don't do that. And I was like, oh, I think that's the end of this conversation. 

08:38
Aiko Callahan, DPT
And that's typically how it goes. So I think as a physical therapist, we really want to listen to what that artist's goals are and say, okay, it sounds like you really want to continue to use to really go into extreme ranges of motion. Let me see how I can support you in that. Let's talk about pacing strategies. How do we make it so you're not spending too much time in that position? Can we modify that? So I think understanding how deeply tied to hypermobility an artist is really important for making sure you're on the same page. Another consideration is the mechanism of onset with hypermobility. With all these little instabilities that you may have going on at different joints, you can sort of see the effects of repetitive microtrauma. Or when you're looking more at, like, hypermobile Eds, for example, if you really are looking at connective tissue differences, smaller forces can cause more issues than we would expect. 

09:41
Aiko Callahan, DPT
Had people have one really good sneeze and then sublux a rib and then you're dealing with that, right? You wouldn't expect a sneeze to create so much pain in an individual, but it certainly can when you're dealing with someone who may not have as much stability throughout their joints. So again, that comes back to sort of these differences in connective tissue. In the table, we talk a little bit about types of pain. So, like Stephanie was saying, typically with musculoskeletal injuries in performing artists, we are thinking of no susceptive pain, right? But again, with hypermobility, you may need to keep an eye out for more of this nociplastic pain, again, formerly called centralized pain. And sometimes it can be really challenging to know where one stops and the other begins. But I think in general, when you have a conversation that gets more into a description of their pain, someone can have ankle pain, and there's a layer of nociceptive pain, but there's also a layer of nociplastic pain. 

10:43
Aiko Callahan, DPT
So then you're like, well, what part of your pain changes? Say, when you're really fatigued or you haven't had enough sleep, or sort of trying to piece out what is more mechanical and what is more when you're having other stressors that might exacerbate more nosoplastic pain. So getting into that and really understanding the artist's experience in regards to what their pain is like is also really important. Prior treatment as a physical therapist treating a dance population, chances are those dancers have had physical therapy before, especially if there's someone who's had a number of musculoskeletal injuries. So knowing what's worked in the past and what hasn't is really critical so that you don't waste time as a clinician. So I think it's where open and honest communication is really important. When you look at sort of the very traditional approaches to PT, do three sets of ten of these five exercises every other day. 

11:49
Aiko Callahan, DPT
We've all heard some of this in the past. If you just throw someone into that, you have the potential to do more harm than good, because you haven't necessarily looked at neuromuscular control. You might be dealing with someone who has limited proprioception, and you're going to see a lot of compensatory patterns that are really common in hypermobility. So if you get someone going on an exercise program and you haven't addressed those issues, you can really run into some trouble and you can really limit progression. And then also thinking about a performing artist in the context of performance schedule, I've got to be ready to go by such and such a date. I need to be doing x number of performances by such and such a date and then compound that with the fact that hypermobile dancers or artists with hypermobile Eds may take a longer time to recover. 

12:41
Aiko Callahan, DPT
You really want to prevent the potential for setbacks as much as possible. So that's also another important thing to keep in mind. You might want to ask your performing artists how do they self manage? This can be one of the most important areas of education that a clinician can provide, particularly if your patient may not have consistent access to physical therapy. And that can be due to any number of reasons, whether they're traveling in a show or there's insurance issues or transportation issues. So giving them the tools to help manage their own issues is incredibly important. So things like teaching self mobilization or muscle energy techniques for when things get a little out of whack, that can be a really important tool to have. But you have to figure out what they don't know in order to sort of help figure out what tools you can help provide. 

13:35
Aiko Callahan, DPT
And another thing that we tend to look at in physical therapy in particular are habitual postures. So it's important to look at how they stand, how they're sleeping, sitting postures, as a lot of these postures that we don't think about so much can really influence muscle balance around a joint and potentially set someone up for injury. And I think we see this even more so in hypermobile individuals because they can't really rely on the stiffness of their ligaments to maintain that sort of optimal joint position. So muscle imbalances tightness or a particularly overactive muscle can have the potential to pull the joint a little bit off kilter and so that can sort of set people up for pain as well. So again, going over habitual postures and seeing how they sit, my favorite with hypermobility is seeing them sitting in a chair where they sort of wrap their legs, spiral their legs down around each other. 

14:33
Aiko Callahan, DPT
I feel like as soon as I see that I'm like, AHA, okay, hypermobility, here we go. You can pick up a lot on a lot of this just in the interview process, right? And then when you point that out, they usually bring their legs up and sit one hemiplvis. And so you see a lot of this postural changes and stuff like that and you figure out that they have their comfortable positions that they like and as you get more into an examination, you'll be able to piece out why they might really like those positions. Another thing that we really like to consider is someone's social support system. So I know we've been talking a little bit more about sort of physically what you're seeing with the dancer, but the support system really is so important? What is their social environment like? What is their studio like? 

15:23
Aiko Callahan, DPT
Do they have a director or a teacher or coach who encourages them to modify their warm up? I've talked to dancers who are like, oh, yeah, my teacher is totally cool if I just stop doing this particular warm up at the bar, and I go and do my own thing for a little bit, and then I come back. And I love hearing stuff like that because that's such an improvement from a lot of the stories that I've heard before. So you hope to see more and more of that in the studio? Or conversely, are you in a situation where that artist is sort of pressured to go beyond what's safe for their bodies? And I think that can be a really challenging thing because particularly as an adolescent performing artist or as a young performing artist, you're trying to push yourself. You're trying to do everything you're being told to do, right? 

16:14
Aiko Callahan, DPT
And you trust the adults around you to consider your safety. So I think it can be really challenging in some of those situations to make those decisions as to what's the best thing for this particular performing artist. Another thing we look at is sleep. Poor sleep is incredibly common in hypermobile Eds and hypermobility spectrum disorders. And that should concern us, given that fatigue is a really big risk factor for dance injuries. So if you think about the presence of poor rest and how that can set someone up for dance injuries, you can sort of see how those two things might be problematic for one another nutrition. So when we talk about getting adequate know, historically in dance, like Stephanie was talking about, we see disordered eating and think that it's more of like a psychological or behavioral more. When you kind of go away from the dance injury research and you look more at the Eds research. 

17:14
Aiko Callahan, DPT
I think it was Dr. Carolina Baez of Alasko. She proposed a different model for disordered eating in hypermobile Eds and hypermobility spectrum disorders. So that includes things like abdominal pain or feeling full early, right? There's all these other things. I believe there's some sensory issues as well. So there's all these other little components that really could potentially be addressed by a multidisciplinary care team that tend to just get ignored in favor of, well, you're a dancer, so your issue is psychological and behavioral versus maybe we want to take some time to really delve into the why of some of these things. I met a dancer who was sort of transitioning out of her dance career and more into academia who had this issue, and she said to me, she's like, no one asked me if my stomach hurt when I ate. They just assumed that I would say my stomach hurts. 

18:14
Aiko Callahan, DPT
And they were like, well, that's because you're anxious, and that's because you have these psychological issues that are contributing to that and she was like, no one really listened to me when I said, I can't eat that much food. When I do, my stomach gets really full, and if I eat too much, I have a lot of pain. So it's very frustrating to hear those. So really what we hope for is that this model that Dr. Baez of Alaska proposed starts to get a little bit more recognition and perhaps another way of looking at this. In our dancers, for whom we suspect a connective tissue disorder, menstrual history is actually a really important thing to look at. Does their cycle have an effect on dance and training? While I think a lot of artists might be aware of Bloating and how it might affect how they look or feel, everyone's looking in the mirror in a ballet class, I think they aren't as aware of how that abdominal bloating can inhibit the abdominal muscle activation, which in turn can decrease support of the pelvis. 

19:19
Aiko Callahan, DPT
And when you consider the importance of proximal stability for distal mobility, a stable pelvis is absolutely crucial for leg movement without incurring injury. 

19:30
Jennifer Milner
Yes, that is very true. Those are all really interesting, and I think tools that a lot of us kind of who work a lot with hypermobility sort of instinctively use on our own and have noticed but maybe haven't codified it like that. So that's really helpful to sort of hear all of those things listed out all at once. And I bet a lot of listeners are actually busy taking notes and rewinding. 

19:52
Aiko Callahan, DPT
And writing it down. 

19:55
Dr. Linda Bluestein
So that was fabulous information about things that we should be looking at, like when we're taking a history. Right. And whether you're a physical therapist or working on mental health or nutrition or for me as a physician, I mean, anyone who works with this population can really I mean, you've laid out an incredible roadmap for us for things that we should be considering. And you also laid out a roadmap for things that we should be potentially doing in a physical exam. And I would love to hear you talk about that a little bit as well. 

20:25
Aiko Callahan, DPT
Sure. So as a physical therapist, when an injured performing artist comes in, we look at things like alignment. We look at movement, both for daily activities and sort of more art specific. We look at motor control, how do they move, what do they use to move, and what movement patterns does that artist use to complete a particular task or movement? We look at range of motion, strength, and muscle length around specific joint, and we look at joint mobility. So generally, that's typically what we look at in physical therapy. Would you like me to give you sort of a more specific scenario to kind of talk through some of this stuff? 

21:07
Dr. Linda Bluestein
You gave some very specific tests that maybe these are things that Jen, when she's assessing somebody that she would know automatically, maybe a lot of physical therapists would know some of these tests. But if you would be willing to just go through maybe what you think are the couple of most important ones. We also know that, say you're doing dancer screenings, you have limited time, right, so you have to kind of pick where you're going to get the most bang for the buck. So let's say it's not an injured dancer and you want to just get a feel of how their joint control is and how they're doing with their deep stabilizing muscles are there a couple of tests that you feel are most valuable in that scenario. 

21:49
Aiko Callahan, DPT
So if you're looking for screening, I would say the tests on this table, I would sort of divide them up into categories. So the first two tests that we have on there, the Stork test, and then the active straight leg raise to assess pelvic girdle load transfer, those two tests are really looking at the stability of the pelvis. So we look at these to determine if someone has good proximal stability around the pelvic girdle. So the Stork looks at this in a weight bearing position on your feet and the active straight leg raise looks at it lying down. Obviously, the Stork is a little bit more functional because they're on their feet. And you can sort of see how transferring what happens in the pelvis when you transfer your weight onto 1ft, as you would for doing any movement right, with a gesture leg. It's very functional to see what that's like. 

22:42
Aiko Callahan, DPT
And you can really get a sense of how well they can weight shift and whether the bones of the pelvis move in a particular way that you'd expect it to, or whether you start to see some compensatory patterns in movement. Because if you see a lot of compensation, if you see them hiking that hip, then you know that there's something going on in terms of the way that they move. The active straight leg raise is a test where they're lying down and the patient will lift their leg and then sort of let you know how difficult that is or if that brings on pain. And then you essentially squeeze the sides of the pelvis together, basically to create stability through the pelvis. And then you see whether that alleviates their pain or whether they find that it's much easier to lift their leg now. So the nice thing about that one is that if you provide that what we call force closure of the pelvis manually and that takes care of someone's pain, then you know that they might do well with something like an Si belt or obviously the best would be stability through the musculature. 

23:49
Aiko Callahan, DPT
So you might say that person might be appropriate to refer for more core stabilization and whatnot. So I sort of think those two tests I'm really looking at, does this person have a stable pelvis that allows force to be transmitted through the pelvis effectively. The test after that is the active straight leg. Okay, so this is where it gets a little confusing. There are two active straight leg raise tests. One is for the pelvis that we just talked about. And then there's one that looks at the way that the head of the femur moves in the hip. So what the patient does is the same between those two tests, but what the clinician is looking for is very different. So the active straight leg raise to assess anterior femoral glide syndrome is really looking at the stability of the hip joint. It's very common that when you go to lift the leg forward, if the ligamentous structures around the hip don't prevent the femoral head from moving forward, you can end up with sort of a pinching sensation in the hip. 

24:58
Aiko Callahan, DPT
You can have pain in the hip. And so as a physical therapist, if someone goes to lift their leg in that manner, what I'm looking for is does pushing that femoral head back down into the joint so the joint is a little bit more centered, does that help to alleviate their pain? Does that take away their pain? So one looks at pelvic stability, one looks at hip joint stability, if that makes sense. I would say that I find that test to be particularly useful in the ballet population because you have a lot of people who are working in a turned out position, a lot of people who every time you tondu back for arabes, even just functionally stepping forward with the other leg. Anything that pulls that limb into extension can create sort of excessive anterior shearing of the femoral head and the hip joint. 

25:55
Aiko Callahan, DPT
So definitely a good thing to look for because we really do see it quite so often. And then the rest of the tests on this table here really focus a little bit more on motor control. The first sort of motor control test is the forward step down test. And I would say the forward step down test is something we use sort of in the general population. I would say that I probably use the forward step down test more in the hypermobile population because I tend to see more deficits in motor control because you see sort of altered movement patterns. While I don't always think of it as sort of like a dancer test, I will bring it in when I see hypermobility because sometimes even just your daily movements of going down the stairs or what have you'll see some interesting things that might cue you into why someone is having some issues. 

26:50
Aiko Callahan, DPT
So there's the forward step down test and then more from the dance injury literature. There's the airplane test, the single leg sote test and the topple test. And these are looking at basically, are you able to control your pelvis and trunk while you're doing that airplane motion? So again, the body is tipped forward. The body is sort of parallel to the floor. The leg is extended behind you. Your arms are out to the side, and you're doing, I believe it's five pliers and bringing the arms down and together. So can someone maintain control? And I really love the airplane test because dancers are so used to being upright and looking in the mirror and getting feedback from the mirror. So when they're doing the airplane test and their focus is a little bit more down, you can sort of piece out some other issues and see what they look like when they may not be getting as much of that visual feedback that we tend to rely so much on. 

27:47
Aiko Callahan, DPT
And then the single leg foot test you're looking more at, can you keep that proximal stability in a jumping situation on a single leg? And then the topple test is looking at pirouette ondeor to see whether you have that control. And I think dance teachers can always pick out when people are having these issues. These are common training issues, right, that we see over and over again. So I feel like these tests, when looking at them from a physical therapy perspective, it just kind of gives us a clearer picture of where they might be having some of these, again, proximal stability issues as it relates to dance. And then the last test on here is more specific to the artists who may be using more of their upper extremities. So the closed kinetic chain upper extremity test. So this was new to me, but basically you're in a plank position and the timer is set for 15 seconds, and you see how many times the individual can tap to reach behind the other hand, how many times they can do that within a 15 2nd span. 

28:52
Aiko Callahan, DPT
And the meantime for healthy adults is 13.31 repetitions. So, like 13 repetitions is sort of there for the normal adult population. So that's something that your circus artists, your aerialists, your hand balancers. I'm sure it's really important to be able to see what kind of control and stability they have as they're doing this. Stephanie, do you have anything else to add for that particular? 

29:19
Stephanie Greenspan, DPT
Yeah, well, I mean, it's a time test, but, you know, also you can look a lot at motor control while you're doing it at the same time and get that information out of it as well. The norms for people female identifying individuals are actually done with knees on the ground, which I would never ask a circus artist to do that. So we need some norms in the same position for adults so that it's more standard. And that was one I used in my study. So we'll have norms in circus to. 

29:48
Jennifer Milner
See well, and several of the tests that you mentioned are tests that are often used for prepoint assessment to make sure dancers are ready to go on point. And so many of these, as you. Mentioned have to do with proximal stability. And I think artists, athletic artists, are really good at faking that and doing a lot of stability through the ankles and knees. If you're a dancer, I imagine there's a whole lot more stability going on in the elbows and wrists than should be for people who do stability on their hands. So it's really great to be able to sort of tease that out. And those were some really excellent kind of concrete steps that we can go through because it's really hard to codify art, right? It's hard to codify something like that. But being able to codify how to treat artists is super helpful so that we can look and say, well, I know you can put your leg behind your head, but are you doing it correctly? 

30:44
Jennifer Milner
That's cool. But can you do that and also not take your shoulder out of the socket? That's what we want to see. So I know that you guys developed a hypermobility screening tool. Can you tell us a little bit about that? 

30:57
Stephanie Greenspan, DPT
Sure. We're really excited about this tool. And it started out as a table, but it was too unwieldy as just a table. And really it made us think about we're essentially trying to guide clinicians on a review of systems. So the article is geared towards physical therapists, but certainly this tool could be used by any healthcare professional. And the idea is, if you have someone that is hypermobile, especially if you suspect Eds, important to look for signs and symptoms of other systemic issues. And because there are so many that are possible in Eds, it's a really long list of questions. So as were trying to sort out what to do with all this information, we decided to explore creating a tool that would be a self report. So it's a checklist that the patient can fill out. And so lots of benefits to that one clinician doesn't have to remember all that stuff. 

31:57
Stephanie Greenspan, DPT
So for our clinicians that don't know much about Eds, we want them to be able to also screen and refer people out, not just the people that are specialists. Because the reality is there aren't a lot of people that have deep knowledge about EDFs out there for people to go to. And that's a big issue, takes that away as far as memory and knowledge base, it also saves time, right, to ask all that information when there's limitations on time in a visit or a number of sessions to get through all of that screening, which is really important, but could be really time consuming to do. You can give this survey to your patient ahead of time. And one other point about doing that ahead of time, we sent it out to a few people we knew to just see what they thought from a patient experience. 

32:51
Stephanie Greenspan, DPT
And one of the things that came up is also just that it can be a little bit retraumatizing sometimes to think through all these issues in your body, so giving them time and space to maybe do it at home and that sort of thing as well can be another benefit. And so, just to tell a little bit about the framework of the tool, so the first page of it is a list of signs and symptoms that a patient might experience that are related to disorders in the various body systems. Because often these underlying disorders may not have been diagnosed or been given a label. So that allows us to screen and pick up these things that way. The second page is the opposite, it's a bunch of labels. So it's various diagnoses they might have received around these different body systems that maybe haven't been yet linked as being part of one unifying disorder, as being part of Eds. 

33:48
Stephanie Greenspan, DPT
So it gives them two ways to give us the information. If you've ever created a survey tool, you know, often you have to ask it more than one way to not miss things. And so it lets that capture happen from both. And so then once this is filled out, the clinician can take a look at it. And because it's organized essentially by body system on both sides, they can have a sense, first of all, by looking at it, as to how many body systems are involved, right? Do they have checks in boxes in all of those categories? And they can also get a sense of what's the extent and involvement are they checking off all of the symptoms in that one category or is it just one thing? So it gives them some big picture perspective from there. And then to give some additional guidance of what to do with this, there's a guide for therapists about identifying based on what the answers are and what type of issues they might be having, is, what kind of healthcare professional would be appropriate for them to have on the team to help with that. 

34:55
Stephanie Greenspan, DPT
And so that's where then the clinician can have a conversation with the patient and see, I see that you're having issues related to, maybe it's disautonomia, maybe it's around eating and figure out who to send it, am I going to send you to a GI doc, am I going to send you to a disautonomy specialist? That sort of thing. So it actually gives them guidance as to what kind of professionals would be appropriate to refer to. And patient might already have some of those professionals on their team. We hope that they do, but if they don't, then that clinician can help them build the team, because it takes a lot of different people to help support these individuals well, right, we can't specialize in all those different things. And so trying to really help them build a team, it empowers the clinician to do that. 

35:51
Stephanie Greenspan, DPT
So our hope is that we start addressing the really common issue that people with Eds often are diagnosed long after they start showing symptoms of it. That often the variety of signs and symptoms they might have are brushed off by providers or friends or family and kind of ignored, of like, why are you always complaining about that stuff? The links aren't made. So we're hoping that having a tool like this will help providers that aren't as familiar with Eds to still pick up on the fact that it might be there, and at the very least, get people to the proper providers to help address these things so that they don't get ignored again. So hopefully it'll lead to earlier diagnosis. And one thing we're looking at, so we created this tool kind of as part of this review paper, but it hasn't been validated. And so to improve upon it at the moment, we're looking for funding to do a validation study to a sense, so that we can bring in a team of specialists to evaluate the tool. 

36:59
Stephanie Greenspan, DPT
Is there anything we missed that should be on there? Are there things that should be prioritized or other things that maybe should be left off of it so that we have the best tool possible and then send it out once it's revised into populations that we know have Eds and that we know that don't, and see how the tool does and sort of distinguishing those populations. So there's work to be done on it. So there might be another version down the road, a new and improved version, but we hope that in the meantime, clinicians will start to use this. And the idea is that it's pretty obvious to someone if a patient is hypermobile as a physical therapist. In other settings, there's such a high prevalence of pain, you could think to give this tool out to anybody who's coming in with pain. So those would be sort of the target populations to give out the tool. 

37:52
Stephanie Greenspan, DPT
And realistically, we designed it for physical therapists, but it could be used by any healthcare provider to do the same screening. It's certainly nothing about the tool that's specific to physical therapy. 

38:03
Jennifer Milner
So that sounds amazing and I would like it in everybody's hands. Is it the sort of thing that providers can get their hands on? Is there a way to have access to it? 

38:15
Stephanie Greenspan, DPT
Yeah, we'll have to figure that out. So one of the things we talked about before we got on was that this is published in a publication that isn't open access. People can email Sharon Kunski, who's the editor, and get a copy for themselves that way, but it's not freely accessible. So I'll have to talk to her about the tool specifically out of there, if there would be a way to extract, you know, certainly the people who have access, which is anybody who's a member of the Academy of orthopedic Physical Therapy in the APTA, which is a big group, but it's certainly not everybody that could use it. So that's a great question and we'll have to look into it. And if we could, then it might be something that we could put up on Eds website or maybe a more mainstream place where the people that aren't learning to educate themselves yet about Eds could find it too. 

39:10
Stephanie Greenspan, DPT
Something we'll work on. 

39:12
Jennifer Milner
I know that after this comes out, we are going to be getting messages. Where can I get a copy of that tool? I just had to ask that up front. 

39:21
Dr. Linda Bluestein
And if we have further updates, we will be sure to include that in the show notes because this is definitely something that I use in my practice. And as soon as I saw it, which I was very excited to get a little preview quite a while ago, and then I kept like, is it out yet? 

39:36
Stephanie Greenspan, DPT
Is it out? 

39:38
Dr. Linda Bluestein
And thank you, by the way, for putting in the little thank you to me for my I was thrilled to get to read this paper before you all published it because it really was phenomenal. It's a great resource, it's a great summary. And then you added a bunch of different with the tables and the screening tool. What I love about the screening tool too, is that you call it a hypermobility screening tool and it's not designed to diagnose Eds, right? It's designed to capture just kind of a more complete picture of these people who may be suffering from a lot of different problems and no one is connecting the dots and putting this together and saying maybe these things are related. So I think the other thing that I see happening is patients directly getting access to this and hearing from a lot of patients that they want it, that they are going to want to fill it out and take it to their PCP who may know nothing about hypermobility. 

40:33
Dr. Linda Bluestein
So I almost feel like, well, you did a great job of explaining how the tools are to be used. And since it's like three pages, I think it's kind of a great standalone, I guess is what I'm thinking. And like you said, it's going to evolve as there's the validation and all of that. 

40:49
Stephanie Greenspan, DPT
Yeah, realistically, even if you do know a lot about EDF, I use it in my clinical practice because I had early access, because it saves so much time. Like to sit there and inquire about all those systems would take my whole visit, really. And so I ask permission because it's a lot for people to look through and consider. So individuals, for example, that I might see as part of a screening that aren't having a current problem, I try to approach and say, hey, we have this tool. If you're interested in understanding a bit more about your hypermobility or seeing if there's other involvement, I'm happy to share it with you. And not everyone's ready to go there, right? There's definitely sensitivity about their bodies, especially as a performing artist, maybe opening the door to revealing these other things that they're managing. So there's some of that too, but it's really helpful to get that whole picture, even if you understand things. 

41:52
Stephanie Greenspan, DPT
So it's not just for people that don't know eds, I guess I want to say, definitely gives you that snapshot. We do often have a medical history, but it's not that directed and specific to things that we would expect to happen in someone with Eds. 

42:09
Dr. Linda Bluestein
And as you said, by organizing, by system, it helps you to see, do the problems really lie, like, in two systems or are they really diffused? Well, this has been such a great conversation, and I feel like I've learned a lot even though I've read this paper like multiple times, because it's so great. And obviously the resources, the references that you collected, the number of papers that you must have read in order to publish this is incredible. Is there anything else that we didn't ask you about that you wanted to mention? And also if you could share more about how we could learn more about what both of you, the work that you're doing and how to get in touch. 

42:49
Stephanie Greenspan, DPT
Yeah, I think we really appreciate your podcast and what it's doing to educate people about hypermobility out there. From clinicians to coaches to people with hypermobility, it's brought so many resources. I've enjoyed listening to so many experts here. So I think one of our big messages is just like, it takes a team and anything you can do as a coach, as a family member, as a clinician, to really help build a team to support these artists is really important. And as far as contacting me, so my website and my social media are both under artleticscience, so instead of athletic, it's artletic, A-R-T-L-E-T-I-C. So I have a website, Artleticscience.com, and on Facebook and Instagram Artleticscience as well. So I post stuff about my research, whether I'm recruiting or finally writing stuff and getting it out there, and presentations and workshops I usually put on there. So feel free to reach out to me any of those ways. 

43:52
Aiko Callahan, DPT
Yeah. And for myself, I have a LinkedIn profile, so you can reach out to me on LinkedIn if you'd like, or I can provide my email if that's all right to do through here. 

44:03
Dr. Linda Bluestein
It's whatever you can always okay. 

44:05
Aiko Callahan, DPT
Yeah, totally. So if you want to reach out to me, you can email me at icocallahanpt@gmail.com. I might have to spell that out. So aikocallahanpt@gmail.com so yeah, would love to engage and love to hear from your listeners. And thank you again for this opportunity. It's been really nice to be able to have such a great conversation about all of this with you. 

44:34
Stephanie Greenspan, DPT
Definitely, thank you. 

44:35
Aiko Callahan, DPT
Yeah. 

44:36
Dr. Linda Bluestein
Well, thank you for coming on, and we love the work that you're doing, and it's such an important area for research, and we need more data so that we can help our artists and our athletes have longer. Careers so that they can be walking when they're in their and not, you know, all kinds of problems down the. So we're thrilled that you came and chatted with us. 

45:00
Aiko Callahan, DPT
Absolutely. Thank you for having us. 

45:03
Dr. Linda Bluestein
Excellent. And you've been listening to bendy bodies with the hypermobility MD. And our guests today were DRS. Aiko Callahan and Stephanie Greenspan, who are both physical therapists who specialize in working with aesthetic athletes. Thank you so much for coming on, and we'll see you next time on the Bendy Bodies podcast. 

45:21
Stephanie Greenspan, DPT
Absolutely. 

45:22
Aiko Callahan, DPT
Bye bye. 

45:24
Dr. Linda Bluestein
If you love what you learned, follow the Bendy Bodies podcast. To avoid missing future episodes. Screenshot this episode. Tagging us in your story so we can connect. Our website is WW bendybodies.org and follow us on Instagram at bendy underscore bodies. Leaving a review. Following the Bendy Bodies Podcast and sharing the podcast helps spread the word about hypermobility and associated conditions. The 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. We'll catch you next time on the Bendy Bodies podcast.