A Multidimensional Approach to EDS and HSD Care with Dacre Knight, MD

[00:35] Dr. Linda Bluestein: Welcome back, every bendy body. This is the Bendy Bodies Podcast, and I'm your host and founder, Dr. Linda Bluestein, the Hypermobility MD. This is going to be a great episode, so be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Today I am so excited to have Dr. Dacre Knight here with me. Dr. Knight established a specialty clinic for treating patients with hypermobility syndromes, including hypermobile Ehlers-Danlos syndrome, otherwise known as hEDS, and hypermobility spectrum disorder, HSD, at Mayo Clinic Jacksonville, Florida in 2019. Prior to joining Mayo Clinic, Dr. Knight was an assistant professor of medicine at St. Louis University. He also served 4 years as an Air Force physician at Scott Air Force Base and was the director of Phase 2 Clinical Laboratory Education Program and chairman of the Life Support Function Committee. Dr. Knight, hello and welcome to Bendy Bodies.

[01:52] Dacre Knight, MD: Yes, hello, and thank you so much for allowing me to be here with you today. I'm really excited to be here.

[01:56] Dr. Linda Bluestein: I'm super excited to chat with you. We've chatted a couple of times, and I'm so excited for the audience to get to hear directly from you and hear about your incredible experiences. And I want to start out by asking you, how did you get interested in EDS in the first place?

[02:12] Dacre Knight, MD: Yeah, it's a funny thing because some people come on to it and they probably didn't want to be here, and then some came on to it because they were interested in it. I'd say it's probably more the latter because when I had completed my service in the Air Force and joined Mayo Clinic, there's a world of opportunities — research and all sorts of clinical conditions and rare diseases and things like that that you can get involved with. And one of them came up as running the Ehlers-Danlos Syndrome Clinic because they had some shift in staff and things like that. And really what it came to is volunteering to do it because I had found interest in it, and I thought it would be a good area to build up some research and kind of move forward in our understanding of the condition because it was very intriguing to me. I had encountered patients in the past, not in a formal setting of an EDS clinic, who had these conditions. And so knowing that there was an opportunity to really develop it further struck my interest, and it's been uphill and hit the ground running ever since then. So very exciting.

[03:26] Dr. Linda Bluestein: I'm sure it must be quite an interesting experience. And I just can't wait to hear all your insights and everything from all these patients that you've seen and research that you've done. In terms of the specialists and the multidisciplinary type clinic that you have, are there other physician specialists there? I know you also refer out to other specialties. How does that work?

[03:51] Dacre Knight, MD: Yeah, so in the typical Mayo Clinic model, we have as many specialists as we can all in one setting, all under one roof so that we can work together. And it's a very unique setting — not unique as in nobody else does it anywhere in the world, but unique for the purpose of giving patients the benefit of having the specialty evaluations without bouncing around and trying to reduce some of that silo effect, which I know is out there in the community a lot and can be a hindrance. For example, there was some of this to some degree when I was in the Air Force, where we had a clinical setting with radiologists just down the hall from me and things like that. So it's not unique, but it is very beneficial to patients.
[04:34] So within our EDS clinic specifically, it's 2 providers. Working here with Shilpa Gajrawala, who is a PA and has recently joined us and has been a great help to allow improved access for our patients to come in and decrease the wait times and things like that. But we also work very closely with our physical therapy and occupational therapy team, our pain psychology team, and so forth.

[05:10] Dr. Linda Bluestein: I trained at Mayo, so I definitely am very aware of that. I've also been back as a patient to Rochester. So I definitely have been the recipient of that benefit — oh, something else comes up, let's see if we can get you in. And in some instances they got me in that same day. And it did seem like there was much better communication between the different departments.

[05:32] Dacre Knight, MD: Yeah. It's not perfect, but anything we can do to improve that communication, that flow. And that was something that was really interesting to me when I was offered the job at Mayo Clinic, because I was talking to a lot of the colleagues who had been here for a long time and they said how they still just pick up the phone and call the oncologist if they have a question about blood counts and things like that on some test results. And we can get formal consultations if we need, but if you need to just curbside someone — hey, I've got this patient, what's going on, what do you think, what should I look at — it's so helpful. And it's daunting when you're coming out of medical school and residency that you just want to go out there all on your own. But to know that there is support in this network of other like-minded individuals that want to help patients and understand conditions and things like that — it's really a nice safety backup and fallback.

[06:25] Dr. Linda Bluestein: Yeah, that's really fabulous. One of the things that I thought was interesting is it looks like you do an echocardiogram on all the patients that come to the EDS clinic. Are you still doing that? And then what laboratory testing is typically performed? And of course, we'll talk about genetic testing later on. So I'm thinking about what other lab testing is usually done.

[06:42] Dacre Knight, MD: Happy to go through all those things because a lot of these things evolve, as you know, and as our understanding evolves scientifically from whatever the condition is. And in EDS and HSD, there's so much that we're learning and still so much we have yet to learn. One of the research studies we're just wrapping up — actually, we're just submitting it for publication now — is data that we've collected on echocardiograms for our patients. Because you're right, looking at our papers that we've done previously on the flow and the process of our clinic, we did typically get echocardiograms on mostly all of our patients because, for several reasons. One is that there's part of the diagnostic criteria that looks at echocardiogram findings — mitral valve prolapse and aortic aneurysms and things like that. And there have been some other similar studies on this same topic in the past.
[07:38] But what we wanted to look at with this recent research study was just to see what the findings are that we see at a larger scale. So with a larger sample of patients, there was some evidence that echocardiogram findings are actually not much different — really not different at all — compared to the general population. And so, as previous studies had also established, it warrants — of course we do cardiac exams on all of our patients. So we do the auscultation, we listen to hear what we can find using our stethoscope and doing the things that we do on physical exam. So that's still absolutely warranted and indicated. And if there are findings from that, then we would have an echocardiogram ordered.
[08:27] But just off the bat, just because there is presence of hypermobility, and knowing through these large samples of patients that there is not any increased prevalence compared to the general population, there's no indication for doing an echocardiogram for every single patient unless there are those cardiac findings on exam. So to answer your question, no, we don't do an echocardiogram on every single patient unless we find some abnormalities or some information from the history or family history that might serve us to investigate a little bit further.

[09:01] Dr. Linda Bluestein: Okay, great. And then what about other, like, blood work that you might do?

[09:06] Dacre Knight, MD: Yeah, so that has changed a little bit in some ways. We've probably broadened that — whereas with the echocardiograms we kind of narrowed it down, zeroed in our focus, tried to conserve resources and insurance billing and things like that if it's not necessary, if it's not changing management. But some things for the lab work have been pretty consistent. And we also have to consider what labs patients have recently received. If they just saw their primary care doctor and got certain labs done, of course we don't need to repeat them if it's just a matter of days or weeks ago and things look normal with no major changes or medication changes since then.
[09:51] But still, we do want to get things like a complete blood count, metabolic panel, and things like that, just so we get some basic assessments on other contributors that might be symptoms of another condition separate from HSD or hEDS. Things like anemia can be contributing to fatigue. So do we need to look at the blood counts and hematocrit and hemoglobin and things like that, or other chronic infections? Maybe we look and see if there's any sign of leukocytosis, elevated white blood cell counts. We do a complete blood count, general chemistry — same thing. We want to make sure organ function, as far as signs we can take from blood work. So kidney function, liver function, electrolytes — sodium, potassium — is all where it should be. And then vitamin D level, thyroid — of course, as we know, thyroid function can have implications on fatigue, energy levels, temperature tolerance as well. So we do those pretty standard.
[10:53] And then we've added on probably a little bit more of an investigation of some autoimmune markers too, but we don't really dig too deep — just things on the surface. So maybe some inflammatory markers, CRP, ANA, and then some mast cell screening as well. So tryptase and some urine mediators too. Because as we're learning more that there may be some involvement of those conditions with our patients with HSD, and this is just something that we gain from what is out there in the literature and research that's going on.

[11:28] Dr. Linda Bluestein: So that's really interesting. So you're doing some MCAS testing through tryptase and maybe urinary leukotrienes and things like that on most of your patients, or at least a substantial portion.

[11:39] Dacre Knight, MD: Yeah. Because like I said, most of our patients have some degree of fatigue, some degree of — whether it's an allergy condition that may not be just typical allergies, but maybe there is some gut involvement, some gastrointestinal disturbance, or some neurologic effects, even things in the range of headaches. So much overlap from mast cell and all those symptoms too with HSD and hEDS. So we want to make sure we don't miss anything there.

[12:10] Dr. Linda Bluestein: Yeah, definitely. And you've already mentioned some ways in which the clinic has evolved since its inception. Are there other significant changes that you would like to share with us?

[12:22] Dacre Knight, MD: Yeah, so I feel like it's always something new every week.

[12:26] Dr. Linda Bluestein: Yeah, I'm sure.

[12:27] Dacre Knight, MD: Because the number of patients we have seen has increased, and that's great. As you know, and as others who are listening in surely know, there's a long wait list at a lot of places. There's some difficulty to get access in some locations to providers who know about these conditions. So we wanted to improve on that, and we have. Like I said, we added Shilpa to our team. But other ways that we've changed — the testing, we've made some minor changes there, lab work, echos, and things like that. Our involvement with physical therapy and occupational therapy has been pretty consistent. That's one thing that is continuous and has been a constant since our inception. We've added a treatment program too, although that's not that new anymore now — that's our day-long virtual group treatment program. And there are, of course, some adjustments that we make there on length and topics that are covered. So there's always something new.

[13:35] Dr. Linda Bluestein: I'm sure. And I love how the clinic was developed and immediately integrated with research. And you've already published some great papers, including your 2022 paper, Establishing an Ehlers-Danlos Syndrome Clinic: Lessons Learned. And then you talk about one of the tables has the referrals. And of course, it's not surprising to see PT and OT near the top. And also pain clinic and GI were also near the top. Rheumatology was a little lower down on the list, and I think it was like 33% of patients are referred for rheumatologic evaluation. Are a lot of patients coming to you already having had a rheumatologic evaluation? And what are your thoughts about kind of ruling out rheumatologic conditions that might explain a person's symptoms?

[14:22] Dacre Knight, MD: Yeah, that's a great question. To the first part, we do have a fair number who have already had rheumatologic evaluations prior to being seen. And again, back to the access issue, I know many patients kind of look far and wide to see who knows anything about these conditions. Sometimes it's rheumatologists, or maybe rheumatologists in the community have been put to task to just try to evaluate some of the symptoms like the joint pain or widespread pain. They've ruled out the autoimmune condition part and then they say this suggests maybe it's hypermobility or something that's kind of out of my scope, and then patients kind of by course of elimination go through the next steps to see who else might be able to evaluate their symptoms.
[15:07] So yes, we do have quite a number of patients who have had rheumatologic evaluations, and sometimes even internally. So we do take referrals from our rheumatology colleagues here at Mayo Clinic if it's kind of the same course — they've done evaluation for joint pain, ruled out autoimmune conditions, and suggest or see signs based on Beighton score and things like that that it might be some features of hypermobility.
[15:36] As far as your question about what we do about the autoimmune investigation — just as I tell a lot of our patients, because we get this asked a lot — having a potentially inherited disorder of the connective tissue is, as we define it, separate from acquired disorders of the connective tissue, which is what we're talking about with autoimmune conditions where your immune system is attacking the connective tissue or causing symptoms that way. Two totally separate pathways. So we get asked, you know, am I more prone to having rheumatoid arthritis or another autoimmune condition? The answer off the bat is no, not necessarily, because these are two separate pathways. One, we're talking about how the tissue develops and how it's formed in the body versus how it is interrelated with the immune system, which may be overactive in some ways. Separate pathways.
[16:27] Now, however, what we do see very commonly is the overlap of the symptoms. Joint pain can certainly be involved with both. So it does warrant an investigation of both when you have a presentation of what could be either an inherited or acquired disorder of the connective tissue. Hence the reason why rheumatologists are sometimes seeing patients with what may be a genetic condition, and sometimes geneticists see patients who may have a rheumatologic condition in the end.
[16:57] So from our end, when we see patients who may have rheumatologic concerns, we do a joint inflammation assessment — cursory to what a rheumatologist might do, but at least to get an initial assessment to see if there is significant swelling or redness or warmth in the joints, if it's affecting multiple joints or is it just one-sided. And then some of those laboratory markers, which we've expanded on a little bit just to make sure we're covering all aspects of screening that we can — so inflammatory markers, ANA, rheumatoid factors, and things like that — at least help us get an idea where to go from there. So we do ultimately perform some sort of an autoimmune evaluation as well.

[17:42] Dr. Linda Bluestein: That's great, and it's really appreciated that you're explaining the difference between an inherited connective tissue disorder and an acquired one, because I think that is something that is often really confusing to people.

[17:54] Dacre Knight, MD: Yeah, that's right.

[17:56] Dr. Linda Bluestein: Okay, so POTS clinic was the third most common referral after PT and OT, and I do orthostatic vital signs on a lot of my patients — like 10 minutes. It takes up a lot of time out of the visit, but I do that quite frequently because, of course, a lot of our patients have orthostatic intolerance at the very least, and then we want to evaluate them if they might possibly have POTS. So what are your criteria for sending someone to the POTS clinic? And do you know what percentage of those referrals are ultimately diagnosed with POTS, orthostatic intolerance, or some other form of dysautonomia?

[18:30] Dacre Knight, MD: Yeah, another great question. And this is again kind of on that theme of where we have so many overlapping conditions, right? And so many overlapping features. And then our job as a clinician is to try to parse it out and see what's what and kind of help patients understand what's causing what — although we may not always know. So we do want to screen for whatever we can. The POTS and the dysautonomia, orthostatic intolerance, is a big one, at least as part of our screening. Now, what the findings may be can certainly vary from patient to patient.
[19:07] So at least we start with asking, have you even been evaluated for POTS? Do you even know what POTS is? Has this ever come up in your history? More often than not — and I should say this because our patient population, as you also know, is very well educated, and at that point they've come to see us, they've already done a lot of reading and got themselves up to speed on a lot of these comorbidities — I can simply just ask a patient, have you ever had an evaluation for POTS? Has that ever come up? And either yes, I have, I've been diagnosed — okay, well, what's the treatment that you're under right now, how's that going? — or I have been evaluated and it wasn't POTS. Or, in a lower percentage, I would say, I have no idea what that is. And then we'll explain, well, these are some of the symptoms you might notice: racing heart, positional tachycardia when upright specifically, so sitting to standing. The orthostatic intolerance might be some of those conditions of dizziness and lightheadedness that are positional as well.
[20:15] So we just kind of go through that pathway to see what they might report, and if it does look like it's indicated, then we do do testing for POTS. We're fortunate that we have one of — and I just learned this because I was actually with our autonomic technologist yesterday, kind of shadowing her, going through the process of their flow just to understand that better — 22 sites, I think, in the country that have this specific form of autonomic testing that we do, that is quite comprehensive.
[20:47] So long story short, we do the screening, ask the questions. If it's indicated, we'll put in the order for that autonomic reflex screening. This is a test where they check heart rate and blood pressure in different positions. It's not a full tilt, because some of those symptoms can be quite profound if someone does have postural tachycardia syndrome. What they'll ultimately do is also do some of the sweat testing, what's called QSART — so they use acetylcholine on the skin and try to assess sweat gland activity to get another type of autonomic function assessed — but then looking at the heart rate and the variable changes with symptoms, which would, if present, be diagnosed as POTS. And then if that is the case, that's how we route patients to our POTS clinic.
[21:40] Now, if it's not, but we've reviewed the test results for the patients and we still determine they have quite significant symptoms even if there's not that specific heart rate change, then this could certainly be the orthostatic intolerance that so many more patients are dealing with. And a lot of the same management practices go into that. So we'll have some counseling on how to manage orthostatic intolerance — in many ways similar: adequate oral hydration, lower extremity compression stockings, resistance exercises, and things like that.
[22:13] And to answer your question about numbers — I think it's pretty close to what we have seen in other studies about prevalence of POTS and orthostatic intolerance in the community. I would say that about 20% of our patients with HSD or hEDS have some clinically defined POTS. And then a much higher percentage have some degree of orthostatic intolerance — I'm talking about three-quarters of our patients with that. So we still place real importance on getting them that information and counseling on treatment.

[23:00] Dr. Linda Bluestein: So there are only 22 centers in the U.S. that actually do the full autonomic reflex screening?

[23:09] Dacre Knight, MD: Yeah. So there are various ways of doing it. You can kind of do the poor man's tilt, right — you just sit down, you stand up, you check your heart rate and things like that. And that works if that's all you've got, fine. It's something to go off of. But if we want to get all the details of what is the variability and how much implication there might be as far as other defects in the autonomic nervous system — because there's a lot to it, right, it's not only heart rate control — if there's anything else that could be warranting therapy, it's good to have that information.

[23:46] Dr. Linda Bluestein: It's great information to have. And I get frustrated when oftentimes patients will have seen a cardiologist and the cardiologist does a tilt table test and — at least in private practice, I feel like so often — they will view it as a cardiac condition and really just look at the cardiac effects and not consider the gastrointestinal and the temperature regulation and all those other things that you mentioned.

[24:11] Dacre Knight, MD: Right, exactly. Yeah, a lot of problems arise very quickly, as you can imagine, with that.

[24:16] Dr. Linda Bluestein: Yeah, definitely. In the same 2022 paper, you talked about that on the first 483 patients that you did genetic testing on, you found no pathogenic connective tissue variants in 70%. You found VUSs or inconclusive results in 28%. And pathogenic variants or variants of unknown significance likely pathogenic in 2%. Do you think those findings are pretty consistent with what you've been seeing more recently? And also — and probably this is the more important part — how do you determine which patients to test? Because I think this is something that a lot of people find frustrating and confusing.

[24:55] Dacre Knight, MD: Sure. And I've been asked that quite often, actually, about genetic testing. But to start with — yeah, the numbers on genetic tests, and I should say this is something that has evolved in our practice too. So we initially were doing a lot more testing. And I think that is a good thing to point out here. A big change that we've seen in our practice has been the type of patient we're seeing.
[25:29] And this is just from my own observation. From starting the clinic from day one — or even before we hit the green light that we were going to open and operate — we had a waiting list of 100 patients already, even before the door opened. Just because there's a lot of communication in the EDS community, which is great — shared information and knowledge and stuff. But one of those things is: there's a clinic starting up here. So we had a waitlist from the very beginning. And I think — and this was probably continuous for the first few months, maybe in the first year or so — a lot of those patients who we had seen initially were those who were already pretty well established in the community and were in touch with a lot of the goings-on and research and things like that. Certainly we still see a lot of very well-connected and educated patients now, but those at the beginning were the ones who were kind of like the OGs, the old-timers who were very knowledgeable and were seeking more guidance and resources and things like that.
[26:36] To that effect, a lot of — and some of those patients who we'd seen where there was pathogenic testing is another example of that — we had actually acquired patients who had already had a diagnosis. Many of our patients had already had a diagnosis from the very beginning, and they were just seeking more treatment guidance, or maybe they wanted to be involved in our research studies. So I think that has shifted with time. Now we get more of the internal referrals from other departments where they don't know about this, or patients don't know about this, or they just came upon it — someone told them about it, this might be something you're interested in looking into. So that shift has happened.
[27:16] And yeah, so there's been some variations there. I suspect — and we haven't put together the data from those genetic test reports, which is what you're asking about — would it stay the same? I suspect that would change in the sense that we would probably have less of those pathogenic mutations being found, even though it's a very small number. But more of our patients now are just those that kind of just learn about it or just have a new referral. And most often, as we know, hEDS and HSD — the genetic testing would show no pathogenic results. So I suspect that could change in some way there. I think you had another part of that question too.

[28:05] Dr. Linda Bluestein: In terms of how you decide which patients to test, because I think within the community there's so much confusion — they feel like, wait, I think I'm pretty similar to this other person, they were offered genetic testing, I wasn't. This is a question that comes up a lot.

[28:20] Dacre Knight, MD: Yeah, absolutely. For the diagnosis of HSD and hEDS, it's pretty well understood — and even from that data, we're showing hundreds and hundreds of patients being tested with a negative result. And that's as we know: there's no genetic test that's going to be positive when we know the diagnosis is hEDS or HSD. So there are still some patients who have a lot of consternation about this — anxiety related to vascular EDS or classic EDS, or a grandparent who had an abdominal aortic aneurysm that ruptured and things like that.
[28:56] And so what it comes down to is the individual setting. We do need to ask every patient: what is your family history? What are some features that might be alarming to us that could warrant genetic testing or could give us concern that there's something more going on? About your family history that shows signs of one of these more rare types of EDS. Some of those — like I mentioned — aneurysms are one. And the closer the relationship, the more important. So if your mother or father had a brain aneurysm rupture and died at the age of 30, that's a huge red flag. And the more distant the relatives, the less that alarm is. And then there's also sudden death — even if you don't know what was the cause of death, sudden death could potentially be a ruptured aneurysm. And then some other red flags that are signs or symptoms of the rare types of EDS would be colon rupture as well — and we're not talking about colon cancer or surgery, but spontaneous rupture of the intestines. Maybe multiple hernias — that can kind of go along the same lines. Cleft palate, retinal detachment — those can be features of other rare types. And then non-age-related hearing loss.
[30:22] So those are just some very cursory red flag questions we ask. And I have to give credit to Dr. Francomano for her long experience with these disorders, because that was actually one of the first questions I had for her when I came on to seeing these patients, because it's important to know. Because there is a downside to just doing a genetic test on every single patient — it doesn't come with no strings attached. There is cost and time. There's the anxiety of waiting. There's the anxiety of results. And if those results end up being an uncertain variant that ends up being benign, then uncertainty is not something that many people sit well with — even if that uncertainty is benign. So we don't want to put them through that unnecessarily. And in the case of HSD and hEDS, genetic testing is not indicated unless there are some of these other red flags, like the ones I just went through.

[31:21] Dr. Linda Bluestein: That's great information. And by the way, I'm going to mention another paper that you published, and I will link all of these in the show notes. So if people are trying to scribble down names or whatever, they will all be there for people to find. You published a paper in 2023 about the overlap between fibromyalgia and hEDS and HSD. And you actually found that people who had both fibromyalgia and either hEDS or HSD had the most symptom burden and the highest level of comorbidities, regardless of whether they had hEDS or HSD — which is really interesting to me because we keep dealing with this question of which one is more severe. A lot of people that are diagnosed with HSD feel like people don't take them as seriously and things like that. So I think that was a very useful piece of information. One of the things I think is frustrating for people is that they often get diagnosed with fibromyalgia — I feel like this is really common in my patients — and then the diagnostic journey kind of stops after that. Do you have any suggestions for people who suspect that there's something more going on and who have been diagnosed with fibromyalgia?

[32:39] Dacre Knight, MD: You're absolutely right. That can be a big problem, and it's something I've witnessed firsthand too, just like you describe it. The fibromyalgia aspect of the condition is something — just like we were discussing earlier about POTS and orthostatic intolerance — where there's overlap, and just like any of those other things, fibromyalgia can run with it. And what we have seen in the data collected is that actually the majority of our patients also have this condition of fibromyalgia. We don't know exactly what's causing it. In most cases of fibromyalgia, it's not clear what is, if any, cause at all — although we do know from some relatively small but fairly good objective studies that there could be some immune system involvement, there can be some kind of pain pathway signaling involvement and things like that that are thrown askew.
[33:37] The problem that fibromyalgia gets, though, is that there are lots of misconceptions about it in the community, and it kind of permeates through patient groups as well — that it's a wastebasket diagnosis, that there's no good treatment for it, and that they only give you that diagnosis if they can't come up with anything else. And so it's a big hindrance for our patients because, what I tell patients, if you have hypermobility and fibromyalgia, we really need to address them both. Just addressing one doesn't necessarily resolve the other. And we really want to use every resource we can to improve on your condition. We don't want to leave any stone unturned about anything that can be helpful.
[34:21] And so when patients get the diagnosis of fibromyalgia and they miss out on the opportunity to find improvement and treatment for their hypermobility, then they're at a major loss, because that's only half of the puzzle. And likewise, if they get a diagnosis of HSD or hEDS but miss the aspect of fibromyalgia and fibromyalgia management, then there can still be a lot of these chronic pain conditions that persist. And as much physical therapy as you can try to do, we won't find the expected outcomes that patients want. So we really want to give them every opportunity to improve on both.

[35:05] Dr. Linda Bluestein: Definitely. And I take it you see widespread pain quite commonly in your patients. I certainly see that in my patients. And that's a really limiting factor for a lot of them.

[35:15] Dacre Knight, MD: Yeah, so we pulled together some data on the symptoms of our patients, and the widespread pain — whether or not it was actually within the criteria of fibromyalgia — was over three-quarters of our patients. And the specific diagnostic criteria, as I mentioned, for the full sample of how many hundreds of patients we pulled together — at least over 500 — was the majority. So it was over 56% of our patients. So yeah, it's very prevalent, and it's all part of that package of treatment that needs to be addressed in order to find the best resolution.

[35:52] Dr. Linda Bluestein: Yeah, we'll definitely dig into that a little bit later because I'm going to hopefully hit you up for some of the questions that were submitted online and kind of do a little rapid fire at the end with some of those if we have time.

[36:06] Dacre Knight, MD: Yeah, great.

[36:07] Dr. Linda Bluestein: So in your 2022 paper, you had seen at that point 563 patients, and then you had seen 773 by the time you wrote the 2023 paper. Again, I love how the research is integrated right there with the clinic, and having been a patient, I know you get to fill out all these forms — but it's great because this is how you get the data. It's so helpful. So with that first group, you had found that 39% were diagnosed with hypermobile EDS, 48% were diagnosed with HSD, and 13% did not meet the criteria for either. But then in that bigger group of patients, the percentage diagnosed with hEDS was lower — 23% — and 77% were diagnosed with HSD. Do you have any thoughts about that, or can you kind of elaborate on that at all?

[36:56] Dacre Knight, MD: Yeah, the first thing I would suggest — and this is what I was alluding to earlier — is that our patient population has shifted a little bit, just in terms of who's aware and who wants to be seen here. And usually those who have been around longer are the ones we've seen first. Whatever the explanation is, I'm guessing that those who had previously had the diagnosis were connected to the communities and networks, and were the first ones to be aware that we had a clinic coming — and came in to be seen.
[37:41] Another thing that has happened since that time is that we've just seen so many more patients. When we started, it was just 1 or 2 half days per week, so that was maybe 4 to 6 patients per week. And then it slowed down during the pandemic. So small numbers — we were seeing probably a lot of the same diagnoses throughout the first year or 2. And then after the pandemic, we were less involved with coronavirus treatment taking up a lot of the patient appointments, and we expanded the clinic to 4 half days — so we took a good jump there to about 16 patients per week that we were able to evaluate.
[38:28] Still though, with a growing waitlist that was starting to grow from 6 months to a year, to eventually a point where new administration came in and essentially said, all right, we're capping the waitlist — we are not taking anyone else, we need to work our numbers down and get through this. Which was very unfortunate, because patients were calling in and just being told, no, we can't see any more patients. So I was doing everything I could to keep pushing our chair, our department, to find resources and see what we could do. And she was agreeable to help our clinic because it was a great tool for research and for education — we are also involved here in teaching medical students and residents about these conditions that often get overlooked. And so she was very supportive. Fortunately, the hiring process came through, we got a PA, she came to join us, and then all of a sudden we jumped to seeing 30. Now we have access for about 30 to 35 patients per week.
[39:33] And so what that has allowed is the waitlist was immediately reopened and has just come way down, to now where our access is like a month out or even better — we're only delayed by any other subspecialists we work with. But what that has meant is that we've seen so many more patients more recently. So if we look at the numbers from the beginning to the end, it's kind of just an upward bend. And I think, as other prevalence studies may show, HSD is just much more common than hEDS. So thereby, if we're having many more patients, then that will shift our statistics as well to having a higher number of HSD in the more recent studies that are being done. And just from what I'm seeing myself, I suspect that trend will continue to increase.

[40:31] Dr. Linda Bluestein: And for the patients that are diagnosed with HSD and are either perceiving it themselves or their doctors are maybe giving them the impression that they believe it's a less serious condition — can you give any insights into what you tell people if you determine that no, they don't meet the criteria for hEDS, but they do have HSD, and how you actually coach them and educate them on those differences?

[41:04] Dacre Knight, MD: Yeah, I think this is really, really important because this is part of the therapeutic process. First, to have a diagnosis — and then to understand your diagnosis. You're not going to get anywhere until you get those two things established. And there have been psychological studies about this. If someone's given a decision to be made and one group is told that they can change their mind while the other group is told they can't, if you're told that you can change your mind and you doubt something, essentially you're not going to be satisfied with your care, you're not going to be satisfied with your treatment or your outcomes.
[41:38] So establishing a diagnosis and making it very clear what we're looking at during the diagnostic evaluations — as clear as possible — so that we can make it, and then we can move on to the most important part, which is the treatment part.
[41:53] So yeah, it's a great question. Just like we talked about fibromyalgia having so many misconceptions, there are a lot of misconceptions about what you're describing with HSD and hEDS. So where do we come from when we're talking about these terms? I think we should go back to where the research is headed right now, because it's so, so important. And the first thing I'll do with patients — at least in our treatment program — is we try to get a poll to understand where patients are in their journey: how long they've been experiencing their symptoms until they've received a diagnosis. And those numbers have been published, they're out there — somewhere from 14 years, maybe improving to 10 to 12 years now. And interestingly, in our patients, for whatever reason, it seems like it's always a little bit above that average. Patients describing they've been 15 or 20 years dealing with these symptoms until they actually receive some diagnosis of HSD or hEDS.
[43:03] And a large part of that — not to mention that it's really unacceptable given where we are in our medical understanding to have someone wait so long until they receive a diagnosis, to be suffering so long — but it also ties into what are the tools we have to make these diagnoses, right? And if we don't have great lab tests — we don't have a tissue or saliva sample or blood sample that we can take and make that diagnosis as readily as we can, say, check for anemia with a hemoglobin or a thyroid marker — then there's reason why there is so much delay. We have these clinical criteria which are helpful, but it takes time. It takes time to find the right person who's even interested in doing it.
[43:47] So the reason where the research is headed is to try to understand what those markers might be. We want to understand and learn if there's something that we can use — whether it's a genetic test or some other sort of marker that we can take from blood or saliva. And in order to do that, we have to understand what are the causes of these conditions. Is it one gene, multiple genes, other inflammation? And in order to expedite that research as quickly as we can to improve our diagnostic and treatment flow, that's where we designate these groups of patients as distinctly as we can — HSD versus hEDS — because maybe there are differences at a molecular level, at a biochemical level between those groups of patients. It really is theoretical at this point, because we haven't seen any other major clear differences in symptoms. We've got some of our studies where we show the fibromyalgia findings and things like that, but symptoms can be the same. Severity can be the same. And I've seen the whole spectrum from HSD and hEDS patients from one end to the next.
[45:04] So ultimately, it requires the same management — treatment is the same between the two. Eventually we might get to a point where we understand those differences and can test for them and improve our diagnostics. But for now, it's really most important for research than anything else. So we make those labels to help our research studies, but when it comes down to management, it's exactly the same.

[45:32] Dr. Linda Bluestein: And I'm glad that you pointed out about research, because to me, that's one of the most frustrating things. While we want PCPs — private practice PCPs — to be able to assess these patients, there's going to be more consistency if they're seen at a place like your facility where you're seeing such large volumes of this and you are able to consistently make the diagnosis, as compared to maybe somebody else who has much lower volume. I feel like that muddies the waters more.
[46:02] I actually see, not infrequently, adult patients that have historical joint hypermobility and have signs of hEDS like skin hyperextensibility, easy bruising, tissue fragility, things like that — but they might currently have a very low Beighton score. And that's really challenging since the hEDS diagnostic criteria from 2017 start with the Beighton score. Now you can get another point from the 5-point questionnaire, but how do you handle a patient like that?

[46:37] Dacre Knight, MD: Yeah, so it's on a case-by-case basis, but you're right, it could be confusing and frustrating and all the rest — and that's the last thing we want when there's already been so much confusion about symptoms and what are the causes. So we want to try to clear it up as much as we can just to get on with the treatment.
[46:53] But I've definitely seen those patients myself. It's like, for all the reasons that are seen before me, you have a connective tissue problem, right? There's the gut issues, the cardiac or POTS and things like that — there's something there. And what it comes down to is we're still in the dark in so many ways about how these things interact and what is underlying it — between mast cell activity and dysautonomia, central sensitization, and things like that.
[47:24] But long story short, if it's pretty clear that something's there and you can talk to those patients and you can see that all those things line up — and even regarding the Beighton score, whether it's localized, historical, or even post-surgical changes, things like that — we still want to give them the treatment. We still want them to improve any way we can, with every resource we have available to us. So in that case, just like I said with hEDS and HSD and even now historical or localized hypermobility, the management is really all the same throughout. So at least from our approach, we still want them to see our specific physical therapists who work with hypermobile patients, occupational therapists, and so forth, and do the same counseling.

[48:16] Dr. Linda Bluestein: Yeah, that makes sense. My treatment approach is pretty much the same as well, regardless of which of those I ultimately diagnose them with. So I was fascinated to learn about your EDS Living Program, and you published about this in 2023. I would love to know — you and your colleagues describe this innovative care model for hEDS and HSD, which actually has incredible potential for other chronic diseases, which you commented account for 90% of the $4.1 trillion — with a T — annual healthcare expenditures. So I feel like this model really has the potential to change so many lives if it could at some point be expanded for other conditions. Can you share a little bit about this model? What was challenging about creating it? How has that evolved?

[49:07] Dacre Knight, MD: Yeah, so I don't think there's any perfect model. In some ways, our limitations at our clinic — and I'll just be very forthright about it — is that we see as many patients as we can, do the diagnostic evaluation, but we don't have primary care services, so we don't have the longitudinal follow-up. And that's very important for patients because things change, month to month if not year to year. And that's one of our big limitations. But then, vice versa — and you may share some things like that being in the community — you also have limitations because you may not have access to all the resources that we would have at an institution like Mayo Clinic. So it's a balance, and we try to balance as best we can with the time that we have with patients and how to use it to improve their long-term outcomes.
[49:59] So when we were setting up our clinic and we had long wait lists and patients were waiting or maybe even getting turned away, we realized that we have to try to just concentrate and condense down as much of this material and information as we can to, one, give them the education they need about their condition, but also two, to be able to talk about what their individual needs may be — because it's highly variable. We know these conditions have so much clinical diversity from one patient to the next. And as we say, no two patients with HSD or hEDS are exactly alike. So we have to somehow accommodate both.
[50:41] That is what gave us the idea for setting up this treatment program specifically, so that we could do the diagnostic evaluation as the initial consultation — we get those patients set up, we know who are the ones that need to do this treatment program. Just like I was mentioning earlier about referral to the POTS clinic, we refer to ourselves essentially for the EDS Living treatment program, which is a day-long treatment program. The intention of that is to give more of the resource on education behind the conditions that we just can't complete in a single visit. I mean, we spend so much time going through all these red flags and questions about genetic testing and family history and cardiac exams. So we needed a way to afford patients that opportunity for the education. We tie in some of that, and then we put into it also the guidance for some of the standard self-management practices. And what that allows is then, for a final wrap-up return visit, our patients have all this basic knowledge, they've got the diagnosis, and now we can talk through testing results, what are your individual concerns, things that you learned from the treatment program that we can attend to now to make sure we've tied it together as much as we can.
[52:03] So that's the reason that we did it. The challenge is that in some ways even one day is not enough, right?

[52:11] Dr. Linda Bluestein: Right.

[52:11] Dacre Knight, MD: And so we still have questions that come up, which is fine — we're available to answer those and provide resources as best as we can. But then inevitably, the other challenge is getting through a day of it — it's quite a lot of information. So for our patients who have a lot of symptoms like fatigue and nausea and stomach issues, any of these treatment programs can be difficult. And we do get regular feedback that if this was split up over 2 days or half days, it would be ideal. And I would love to do it — it's just based on how our clinic practice is set up to see patients when we can and who's available, right now it's in one day. So that's a big challenge. Maybe with time we'll have some ways to improve on that.
[53:06] But I think what you're mentioning too about chronic diseases — a lot of times patients with chronic conditions are just not given that attention to answer questions about the disease, about the condition. So they learn more and more. A lot of things that we take away from that treatment program is that patients come away like, oh, I didn't realize that this is something I could be experiencing, or maybe it's the first time someone's heard of mast cell or POTS. And so they know now to be monitoring for that. Because how would you know to ask if you've never even heard of it? That's why we want to give them that chance.

[53:44] Dr. Linda Bluestein: That's great. And yeah, I can definitely see where trying to absorb that much information in that period of time is challenging — but there are the practicalities of how do you actually do this exchange of information that is so important. And what has been the most surprising thing about the Mayo Clinic EDS clinic that you've found?

[54:08] Dacre Knight, MD: Well, I think it's the patient population at first, which I was just referring to earlier — very educated, very well connected. And I was embarrassed to say that when I first got into this field, there are so many patients who were educating me in so many ways. But as long as you take it in good humor and as an educational opportunity, it's all for the better, right? There's so much we learn from our own patients. And in fact, that's the reason why we have set up a patient advisory group from our clinic patients that we meet on a monthly basis now, just to get feedback from patients, because there's so much going on that they're doing and learning that we want to know too. There are two sides, two faces to it. So that was an important part of it.

[55:03] Dr. Linda Bluestein: And you said something at the EDS Society conference that I have often said too — and one of the first rapid-fire questions is actually going to be related to this — but if you're a PCP, if you don't have access to the Mayo Clinic EDS clinic, but you have a PCP that is empathetic, wants to learn, is willing to work with you, and is curious, then that might be hugely beneficial for you.

[55:34] Dacre Knight, MD: Yeah, exactly. And that's a very common question we get because, as you're saying, we're limited from doing those primary care services. So patients say, well, now what? I've got a diagnosis, my primary care doesn't know anything about this. And we remain as a resource — Mayo Clinic has a resource on EDS — but that pales in comparison to all the resources that EDS Society has. So we would encourage patients to offer those resources to their primary care, and if they are interested to learn — and many of them are, many of our patients do find good primary doctors who are willing to go on the EDS Society website and, if not attend conferences, at least peruse some of the echo programs and things like that that they have. And that's the key feature of a good primary care.

[56:23] Dr. Linda Bluestein: Definitely. And so this is a perfect lead-in to the rapid-fire questions. I have a few for you. And the first one is: what would you like PCPs to know about hEDS and HSD?

[56:35] Dacre Knight, MD: Yeah, that's a great question. First off, I would say that there is treatment — because it's so, so disappointing to hear patients say, well, I went to this doctor and they said there's nothing you can do to treat it. The answer is that couldn't be further from the truth. There are things that we can do to improve on this, to prevent injuries and things like that. So if a primary care needs to know one thing, know that there are treatment resources out there. We generally do see good outcomes, and that's what we seek. We should try to reach those outcomes we want to find — keeping patients functional, improving quality of life, and all of those other endpoints.

[57:10] Dr. Linda Bluestein: And I know — it's interesting that you talked about our different approaches and different practice settings. It's pretty much as opposite as you can get, because I'm in a community and I really struggle with referrals to different specialists, and I have patients that fly in from different places and I have no idea what they have locally to them. You have the exact opposite situation, but I am able to follow people over time, which is helpful. So I see a lot of things that — okay, like you said, we learn from our patients, right? We learn a lot from our patients and see what things seem to be beneficial. Do you have thoughts from the patients that you've seen about things like regenerative medicine, prolotherapy, stem cell therapy? Have you seen people benefit from that or not?

[58:00] Dacre Knight, MD: Yeah, that's an interesting area because that research is still growing too. I have had patients benefit from it, and the advantage that I see right off the bat is that — if we're talking about even regenerative medicine or prolotherapy — there's still some intervention, but it's not quite the risk of surgery, which carries much more risk of infections and complications and things like that. So that's the benefit I see right off the bat: there's likely an increased safety profile with those types of measures. I mean, we would hope that it doesn't need to come to that point, that we can find other modalities that are even less invasive. But if it does, I would say my impression is that maybe there's this alternative to surgery that avoids some of those other surgical risks.

[58:49] Dr. Linda Bluestein: Yeah, definitely. And what are the things that you have found to be most effective in your patients in terms of treatment?

[58:57] Dacre Knight, MD: Wow, yeah, that's a great question. That's really the million-dollar question, because once we go through all the diagnostics and set that up — done the testing and all those things — now what do we do for treatment? And in some ways, in the back of my mind, I wonder if, out in the community and even at our site, there's just not enough focus on treatment. Even from patients alone who are like, I've got a diagnosis, that's all I wanted — well, no, there's another piece to this. There's the piece of how do you improve with this condition? How do you improve your function and things like that? So don't just stop at getting a diagnosis — you deserve to find improvement in your quality of life.
[59:43] So lots of treatments out there. We do have another research study right now — so many irons in the fire when it comes to research here, which is great, but it certainly keeps us busy. One of them is an outcome study to look and see what patients are reporting they're using and the associated symptoms, because I think that's huge. We can talk and talk to patients until the cows come home about all the things about massage and acupuncture and heat therapy and things like that, but we want to have some clinical data to back it up, and there's not a lot of data.
[1:00:19] One thing that patients pretty commonly report benefit from — and so that's probably one of the first things I encourage after exercise and physical therapy — is heat therapy. Now, autonomic dysfunction can kind of throw a wrench in that, but heating pads, warm baths, things like that — it's obviously very safe as long as you're not burning yourself. So that's a good one.

[1:00:44] Dr. Linda Bluestein: And I'm dealing with an issue right now, and this is a light therapy device that I use that applies heat and also light. And I find a lot of those things very helpful for me personally.

[1:00:55] Dacre Knight, MD: Yeah, you'd be surprised how many patients come in here and sit next to me in the exam room and they just show me — yeah, I've got my heating pad in my purse right here.

[1:01:05] Dr. Linda Bluestein: They're ready. They're ready. What are your thoughts specifically on muscle relaxants? Because when I say muscle relaxants, I'm not referring to like paralyzing the muscles in the operating room, but the medications that patients typically think of as muscle relaxants.

[1:01:21] Dacre Knight, MD: Yeah, this came up actually at the EDS Society conference in Dublin, and I was asked this question. And it's a good question because we're all still learning. Again, when I'm talking about lack of data, there is definitely a lack of data when it comes to patients with hypermobility who've been given a muscle relaxant as a treatment. And there are some interesting theories on both sides.
[1:01:44] I tend not to jump the gun when it comes to prescribing muscle relaxants, although I understand there's a very good argument for how they can be effective. Just in a nutshell for the listeners: if the pain related to hypermobility is a result of spasm because the muscle is trying to counterbalance that hypermobility — the muscle is working extra, causing spasm and pain and discomfort — then that's the idea of how a muscle relaxant could work, which I think is a viable theory. Also counter to that, though — as a kind of a disclaimer — if you have hypermobility because the muscles are too relaxed, could that increase hypermobility and increase injury? Yeah, that's a very good theory too.
[1:02:32] So what it comes down to is we just need to get some more objective understanding, trials and things like that, to know where the answer lies. So in the meantime, I would just go on a case-by-case basis. Patients describe where is your pain, what are the features of your condition, and then have an idea of whether a muscle relaxant could be useful or not.

[1:02:55] Dr. Linda Bluestein: Sure. And another somewhat controversial area is bracing. What are your thoughts on bracing? And of course that can range from a compression type sleeve to a rigid brace for a joint.

[1:03:09] Dacre Knight, MD: Yeah, so that is an interesting one too. And actually the first time I came upon the research and application of bracing was from Dr. Chopra, who I know has been on your show recently too, and he's got vast experience in pain management, certainly with EDS and hypermobility. And I know he was, at least the times I was listening to him give talks, a proponent of bracing as a kind of pain remedy.
[1:03:39] There is a place for bracing as a pain modality that can be safer than surgery, can be potentially safer than medications that have all these side effects. So then there would be the counterargument from the physical therapist who would say that bracing can lead to weakening of the muscle, deterioration of joint stability if it's used for a prolonged period, and if there's muscle atrophy and things like that. So we want to avoid prolonged bracing to avoid that decreased natural stability that's given by the muscles and joints.
[1:04:14] So again, really the best answer I have would be on a case-by-case basis. Yes, if we're talking about pain management, it can be very useful — certainly to get someone to a point where they're able to be more active. Bracing could be very helpful, but just be aware of the risk with prolonged bracing.

[1:04:32] Dr. Linda Bluestein: And that's what I find too — that often, if you support a joint at least in some capacity, they can actually be more active. And that can be really, really helpful to improving functional capacity and quality of life. So people wanted to know if you had plans to open another center, and how difficult is it to be seen at Mayo if you're out of state?

[1:04:57] Dacre Knight, MD: Yeah, I think access worldwide could improve. I'd love to see access improve. We're happy to have patients come from all over, as I tell our patient groups at our treatment program. But really, when patients are traveling so far, that's a sign that they just have poor access locally. And so we want to make that better. I was in touch with some of our colleagues in Rochester at one point who were interested in trying to develop a similar program — because that's what it really comes down to: you've got to find those providers and clinicians who are interested in learning about this condition and treating patients with these conditions. And once it's there — as I was interested from the very beginning — if you find those resources, you can use them and you'll certainly find the patients who want to come and be seen.
[1:05:50] So the development of the program in Rochester, I haven't heard much more about it recently. For now, we do take referrals from Mayo Clinic Arizona and Mayo Clinic Rochester. Maybe they just thought that we were able to see more patients so there was no need to duplicate that. But anyway — how are patients seen by us from out of town? We do regularly get patients from out of town. We do video consultations. What I'd say about that is our first initial evaluation we do face-to-face, because we want to go through all of the things that we can on exam and make sure that we're giving the best treatment recommendations we can. But for follow-up visits, we can do those virtually to make it a little bit easier when it comes to travel.

[1:06:41] Dr. Linda Bluestein: Yeah, definitely makes it easier for people for those follow-ups. And in terms of flares, what do you recommend that patients do if they are experiencing flares?

[1:06:53] Dacre Knight, MD: Yeah, so this would kind of come into that treatment category question pretty well. And it's just dependent on what are the characteristics of the flare. Is it simply a pain flare, or is it associated with neurologic symptoms? Is there some autonomic involvement too? So it's highly variable, with multiple modalities of treatment that can be used — for the same reason that there can be multiple causes of symptoms. We would just have to see what is the intensity of the flare, the timing, and other typical features that we get on history.

[1:07:31] Dr. Linda Bluestein: Okay. And last question from the listeners, from the social media post that I made: do you have a post-diagnostic to-do list?

[1:07:41] Dacre Knight, MD: Ah, yeah, that's a good one. So that's something that we cover in our wrap-up visit usually. And it is usually the case that we've gone through all those diagnostic steps and hopefully wrapped things up pretty well — we've done all the testing we need. So it's not like you need a routine echocardiogram every 6 months. We've done all those things that we need to test for. There's not any specific surveillance that needs to be done other than what you would do routinely with your primary care doctor. So routine lab work, vital signs, blood pressure checks, laboratory analysis. And certainly if symptoms change, you might need some more immediate attention.
[1:08:27] So the first thing that's on our to-do list when I'm writing up my notes is to have some sort of continuity of care, at least with physical therapy. Primary care — having them updated on the clinical documentation and things like that is also an important one. So make sure they have access to notes and records and they can understand what your evaluation and treatment has encompassed. But with physical therapy, if that can be something that's continued locally, or at least access to someone who's knowledgeable — and there are usually more physical therapists out there who are knowledgeable about hypermobility than primary care doctors — that's something I would direct patients to. The EDS Society's provider directory website is a good place to see who are the therapists there that they could potentially work with to avoid injuries, or even if they do have a pain flare at a joint that can be ameliorated with physical therapy.

[1:09:19] Dr. Linda Bluestein: Okay. And where would you like to go next with your research?

[1:09:24] Dacre Knight, MD: Well, I was actually asked a similar question today. We're running our treatment program today, so I was with the group earlier. There's lots of things. Just a brief summary of the things that we're looking at now: as I mentioned, we're looking at outcomes, we're looking at treatments, we're looking at sex differences — why there are so many more women diagnosed than men, even though men are diagnosed. We know this isn't necessarily about sex chromosomes, but there is some penetrance that is certainly increased for women. So those are the big ones.
[1:09:56] And then the biggest probably is biomarkers — genetic analysis and things like that. What can we do to improve the diagnostic testing? So decrease that time span from symptom onset to when a diagnosis is made. The EDS Society has the HEDGE study running. So if you're not aware of that — I'm sure you've given a plug for this here on your show — but if you're diagnosed with hEDS, I think they've actually already completed their collection, but hoping that there'll be some great, interesting results that come from that.
[1:10:42] One that hits home on a personal basis is the question that comes up more frequently about the overlap of neurodivergence. I know you had Dr. Nichols on your show previously too about ADHD and autism. It's just incredible how these things happen in life — our third child was diagnosed with autism. And this was after I'd already started seeing patients and started running our EDS clinic. He was also found to have a de novo mutation in his PTEN tumor suppressor protein — which is a rare disease on its own. And it just blew my mind that here I am now, even if I'm not experiencing hEDS myself, experiencing a family member with a rare genetic disorder. And I'm doing the same exact thing my patients are doing: going online, researching where are the centers of excellence, who's seen these patients, what is the research. And I went through all the same pitfalls that patients experience about how do I schedule, or there's a waitlist, it's booking until 2024.
[1:11:52] So long story short, that's a major interest of mine — this overlap of neurodivergence, autism, and connective tissue disorders.

[1:12:05] Dr. Linda Bluestein: Yeah, that's a really fascinating area for sure. And speaking of doing online searches — because that's definitely how I got most of my information; I was working as an anesthesiologist in the operating room and had experienced a lot of different problems that kind of led to this transition ultimately — do you have any tips for people for how to use Dr. Google in the most successful way? Because there's confirmation bias, right? There are a lot of challenges that come along with online searches.

[1:12:42] Dacre Knight, MD: Yeah, absolutely. Or even online communities too — they can work with you, they can work against you. And I know you're taking a lot of great questions from your social media community, and it's fantastic that there are these networks that can support patients and support research and support our understanding. But on the same side, there are also the pitfalls that come with increasing anxiety and things like that, or not knowing what the real condition is.
[1:13:11] So if I can offer some resources — I mentioned earlier that Mayo Clinic has some simple guides that are very easy to understand on EDS and HSD. But most of our patients and probably most listeners are pretty well past that elementary level of understanding. So the next best really is the EDS Society — the conferences they put together, all the specialists that are there. It's by far the best resource to use. So if you're not sure about what you're hearing in the online communities, check through some of the resources through the EDS Society. If you still can't find those answers, don't hesitate to reach out to your primary care doctor. If your primary care doctor doesn't know the answer, then maybe they at least know someone they can ask, or maybe direct you to some of those more reliable resources. So no need to sit on something that's weighing on your mind too heavily and causing more anxiety. We have the world of information out there at our fingertips — just getting the right kind of guidance on how to use it is important.

[1:14:16] Dr. Linda Bluestein: Definitely. And I like to end with hypermobility hacks. So do you have any hypermobility hacks that you can share with us?

[1:14:24] Dacre Knight, MD: Yeah, this is always a good one. When I see patients and talk to them about all the things that they've gone through as far as the diagnostic process and treatment outcomes and what are potential treatment options, the biggest hack that I've learned from patients is the benefit of heat therapy — how it can be so soothing and alleviating, whether it's muscle spasm, increasing circulation to the area. Heat is really your friend, as long as you're not heat intolerant from POTS and things like that. So do be careful with extended duration in hot showers and warm baths and things like that. But that's probably — if I were to say anything, and I can't take credit for it, it's just what I've learned from my patients — that in my mind is really the safest and easiest go-to: heat therapy itself.

[1:15:27] Dr. Linda Bluestein: Sure. Okay. And last question: where can people find you online? And is there anything that I didn't ask you that you wish that I had asked?

[1:15:39] Dacre Knight, MD: Yeah, so I am always happy to entertain questions and learn. As I said, it's been a steep learning curve and continues to be. So you can find me on Twitter, on X, at KNIDAC. And there is also a Mayo Clinic Connect website where we share research updates and things like that. And there's also a website for our clinic — I don't know if you have show notes, but I can give you those if you want to add those in. Those are some pretty quick and easy links.
Any questions I wish you'd asked? No, I think that we covered a lot, and I'm really glad to be here because getting this information out there is half the battle. And then taking away what we can when research comes up — I'd be happy to come back on anytime too if we have some groundbreaking research that we're ready to share. I would love to be able to give any of those updates anytime we can.

[1:16:47] Dr. Linda Bluestein: I would love that. So consider that you have an open invitation. Anytime you have updates like that to share — because we all learn differently, and even if a paper is open access, it sometimes really helps to hear from someone like yourself who was involved in the research and can give us such a better understanding. And I feel like that can be so beneficial. And then we do link all of those things in the show notes, so they can refer to the paper also if they want. But yeah, I would love to have another conversation.

[1:17:16] Dacre Knight, MD: Yeah, several more. There's a clinical side to it, definitely — from what we're seeing and why we're doing the research. I'd love to keep that conversation going.

[1:17:31] Dr. Linda Bluestein: Fabulous. Well, you have been listening to the Bendy Bodies with the Hypermobility MD podcast. And my guest today was Dr. Dacre Knight, founder of the specialty clinic for treating patients with hypermobility syndromes at Mayo Clinic Jacksonville, Florida. Dr. Knight, thank you so very much for coming on the Bendy Bodies podcast today and sharing your incredible wisdom and knowledge with us, and your experiences. It's just so great to be able to share this information with the community.

[1:17:59] Dacre Knight, MD: Absolutely. My absolute pleasure to be here, and I really enjoyed our conversation.

[1:18:08] Dr. Linda Bluestein: Thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. Visit our new website at bendybodiespodcast.com where you can now view guest profiles and show notes with links to products and journal articles. Leave me a comment, sign up for updates, leave a review or a voicemail, and access the podcast on your favorite player, all directly from our website. You may hear your voicemail in a future episode where we answer your question or dive into your gracious feedback. Follow us on Instagram at bendy_buddies. We love seeing your posts and stories, so be a buddy and engage our community by using the hashtag bendy buddy. That's hashtag B-E-N-D-Y B-U-D-D-Y. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, Twitter, or LinkedIn at hypermobilitymd. Visit hypermobilitymd.com for information about medical services and one-on-one coaching. This podcast is for general informational purposes only and does not constitute the practice of medicine or other professional healthcare services, including the giving of medical advice. No doctor-patient relationship is formed. Do not disregard or delay obtaining medical advice for any medical condition you have. Opinions shared are that of the guest and do not necessarily represent the views of the host or any particular organization. Sponsorship of the podcast does not necessarily mean an endorsement. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.