What to Treat First When Everything Is Flaring with Dr. Dacre Knight (Ep 186)

Transcripts are autogenerated and may contain errors

Dacre Knight, MD: [00:00:00] Getting the confidence of the patient that they can do these things. It usually starts with that consultant or physical therapist at least, to get them into place where they feel comfortable and they feel confident to engage in some of those movement therapies. But it's really important for them to be engaged and because we definitely do want to get them in a place where they're comfortable doing it and confident that they can do it correctly.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast. I'm your host, Dr. Linda Bluestein in the Hypermobility md, a Mayo Clinic trained. Physician dedicated to helping you navigate Ehlers-Danlos Syndrome, joint hypermobility and complex chronic illness. Today I'm joined by Dr. Daker Knight, who is not only an expert in EDS [00:01:00] HSD Pots and mast cell disorders, but is also joining me as a recurring co-host, Dr.

Knight. Recently transitioned from the Mayo Clinic and is now the founding medical Director of the UVA Ehlers-Danlos Syndrome Center, which is officially partnering with bendy bodies. Today we'll be talking about what thoughtful systems-based care actually looks like for EDS HSD, POTS and MCAS, including how to prioritize treatments, set realistic expectations, and avoid common pitfalls.

As always, this podcast is for educational purposes only, and it's not a substitute for personalized medical advice. Stick around until the very end for our special hypermobility hacks. Let's get started.

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Okay, well, I'm so excited to be back with Dr. Knight for another great conversation. And this time we're going to be talking about how we treat these conditions, Ehlers-Danlos Syndrome, hypermobility spectrum disorders, POTS or postulate, orthostatic tachycardia syndrome, and mast cell activation disorders.

it's great to see you again. How are you doing today? 

Dacre Knight, MD: Yeah. So glad to be here. Doing great. Excited for this episode. 

Dr. Linda Bluestein: Wonderful, wonderful. I know that, that, you know, we both know that these conditions, there's no like magic treatment. So trying to chase a magic treatment is not what we're. Trying to share with people.

We're trying to share some ideas that they can try things that are maybe beyond prescriptions, protocols, and quick fixes. Although in the next episode, [00:03:00] we will be talking about kind of our favorite medications to prescribe our favorite, treatments. This episode's gonna be more about strategy and sequencing and, you know, kind of coming up with a realistic plan, not as much, you know, chasing some kind of magic treatment.

So that's what we're gonna be discussing today. And, I'm excited to have this conversation with you 'cause I know we both have treated a lot of patients at this point. and of course you learn a lot, right? I, I learned something really interesting from somebody just yesterday. It's, every day's different, right?

Dacre Knight, MD: Oh, totally. And, you know, I agree. It, it's, it's hard to find the magic treatment, but I, I may add a, a, a, a soundbite here to say there is some magic in the process of it. And I've seen some. Real turnarounds from patients who, and, and I'm just amazed by it too. But at least just, you know, recognizing the diagnosis and then learning about it and learning how it affects them.

And then the whole process [00:04:00] really, it really entails some, some magic to the process of uncovering things that can be treatments for the patients that, you know, really help them get back to living and, and that's what we're all here for. 

Dr. Linda Bluestein: Right, right. Abso absolutely. I imagine you feel the same way. I wanna cry whenever I hear people say, well, I was told that there was nothing that you could do.

And so that, yeah, it just. That makes me so sad. 

Dacre Knight, MD: Totally. And, and it may feel like magic to patients when they get somewhere to be with someone who finally does listen and understand. Right. So that's true. It could be few and far between, but we're trying to, you know, limit those bridges and, and try to be more connected and, and more available to patients and other providers who wanna learn.

Dr. Linda Bluestein: Right, right. And get them connected to the resources that they need, sooner, which is of course the point of the UVA EDS center and, so exciting about that. So 

Dacre Knight, MD: Exactly. Early diagnosis and getting children involved and all the rest. Yeah. 

Dr. Linda Bluestein: [00:05:00] Yep. Yep. Absolutely. okay, so let's start with when you first meet a new patient with EDS or HSD, I guess, I guess that kind of assumes that they have a diagnosis.

So let's, let's say, you know, maybe they do or you suspect, we'll, we'll make it more open than that. what are your first priorities? And now I'm thinking in terms of, you know. Treatment. But you could feel free to add in about diagnosis as well if you want. 

Dacre Knight, MD: Well, that's a great question because we find that one of the big difficulties with making these diagnosis to begin with is that they can come in all different shapes and sizes and varieties and levels of severity.

So really the top priority I'd say, is to get an understanding of where the patients are at that time in that moment. And you know, what is a little bit about their medical history and background? What is more about their understanding of their condition, if they have some understanding, and I'd say likely they do if, like you mentioned, [00:06:00] they already have the diagnosis, very likely that they've gone to Google and, and tried to do a little research on their own, which is totally fine.

That's what we all do in any situation of our lives these days, this, this time. But I would say. With those things, I wanted to get a good idea of what are the levels of severity, of the condition? What are their major impediments? How functional are they, you know, about their daily activities? And so then that can inform us of what level are we starting at.

We certainly don't want to jump the gun and prescribe too much too soon. So we, as with any medication or treatment, we'd always say, you know, start low and go slow. So at what starting point is that, that's what we want to be informed about. 

Dr. Linda Bluestein: Yeah, and, and I agree. I had a patient just yesterday who, when I was reading through their paperwork and reading about one of the concerns that they had, it didn't feel to me like it was as big of a deal, but then as they were describing it and how it impacts their life, I realized it was a bigger [00:07:00] deal.

So I think that's an important thing for patients to realize that. When you are talking about a particular symptom or a particular problem, it's really, really helpful to us to be able to explain, you know, how this impacts your, your life. I was having a problem with my, with my wrist, and I had bone grafting surgery a number of years ago, but the at, at times I had no pain, but I had difficulty like literally opening doors.

Like I would, I would literally like wait for someone else to open if it was a heavier door, I'd wait for someone on the inside to open the door rather than, you know, if it wasn't an electric door. So I think that, that that's an important thing to meet people where they're at and for them to really let us know where they are at 

Dacre Knight, MD: for sure.

And, and to just kind of get a whole better understanding of the whole picture. Right. And, and like you mentioned with your wrist and, and the impediments it causes during the day, we may be able to understand. Better, what the patient is inclined to do or what they had been doing prior [00:08:00] to illness or prior to symptoms so that we may incorporate other resources or other treatments that may, may be beneficial to them.

So not only kind of the standard physical therapy and occupational therapy, but are there, you know, dietary issues we need to involve nutritionists or other, other, you know, health coaching things that we can do or integrative medicine steps that we can take. So we really, really do want to get that full picture for all those reasons.

Dr. Linda Bluestein: Yeah, definitely. what do you think when you think about symptom relief and, you know, you want to be thinking about, okay, how can I address these certain symptoms, but at the same time, you wanna be focusing on the long term. So I guess how do you balance the short term and the long term when you're seeing a patient?

Dacre Knight, MD: Yeah, that's a really good question. When it pertains to treatments, of course, because. We can bring out the strongest medications and wipe away pain instantaneously, really, if we want. Right? but it's likely just not sustainable over the long [00:09:00] term. So we do have to keep that in focus. What is the long-term expectations and what is the trajectory of treatment that we want to keep in the picture?

And because we know that these conditions are likely lifelong, not that symptoms have to be, but the conditions that predispose to those symptoms can be. So we want to have treatment tailored to that. And again, getting back to what are their daily activities? What is their job? What are the, what are those things that they enjoy doing?

Hobbies and so forth. So that's where we want to find, you know, if we go back to the adage of starting low and going slow, we want to find those treatments that are least invasive. That are least disruptive and had the lowest burden to their daily life. You know, if you have to come in for an injection every day, then what's the point of that?

You know? 'cause you're, you're not gonna be able to get back to work if you're spending all your time, driving to and fro. So, we have to keep those in mind. So [00:10:00] again, meeting the patients where they are, is this, you know, going to be, you know, oral medications or, or, or other treatments and therapies that they can do at home.

so they don't have to come in and meet someone if it's therapy. but that's, that's what we wanna keep in mind because ultimately, if it is medications, we want to have something that's, you know, good safety profile, low risk of side effects for a long-term use. And if it's some type of therapy, we want to have some, some way of delivering that, that patients can start learning those things on their own to build up their self-management skills.

And so, again, the burden of treatment is, is lessened by that. 

Dr. Linda Bluestein: So that over time they're less and less reliant on the healthcare system. I, I know when I was at my worst in like 2009, 2010, 2011, you know, I, my whole schedule was like doctor's appointments and I felt like my illnesses were running my life.

[00:11:00] and thank goodness it's not like that anymore. But I do feel like a lot of people, yes, they can really, end up with, they have so many appointments and, you know, keeping track of all their medications and I mean, it can be a really huge burden. So oftentimes they'll get labeled as like, you know, non-compliant, right?

But really there's just, we're asking them to do so much nowadays, keeping track of, you know, if they have multiple different, doctors, maybe they're, they're responsible for kind of, you know, getting that information from one office to another if they're not all part of the same system, which, you know, again, UVA, that should be a, a big advantage there, that people will be able to, you know, actually have people within the same network.

That'd be really huge. 

Dacre Knight, MD: Yeah. No, and, and that's exactly, that's part of delivering the care. And, and there is a focus of, of medicine now that we call minimally disruptive medicine. And, and that's what that, focus is, is to try to lead medications and treatments and therapies that our patient focused. [00:12:00] And, and that means, you know, focusing on what that care involves for, what their life brings and, and what those targets may be.

And, and just overall redu reducing the treatment burden. If we can get adequate treatment with the lowest amount of burden possible, that's the best target. 

Dr. Linda Bluestein: Mm-hmm. Yeah, definitely. And I think another challenge that a lot of people with these conditions have is if they go to, you know, their, their regular doctor, their regular, you know, PCP, they're probably seeing a lot of patients every hour or every appointment is fairly short.

So they're, they're more used to thinking in terms of, you know, oh, if this, then that. So they're kind of, you know, they're, they're not doing a one size fits all kind of treatment, but it's a little bit more that way. Whereas with these patients. Like you already said, they're so heterogeneous, they're so diverse in their presentation.

They're so diverse in how these conditions impact their, their quality of life. So I think that's another, you know, really, [00:13:00] really challenging aspect of, treating these conditions. And I think another, you know, huge goal of, of this podcast has always been to get more and more clinicians interested in treating these conditions and helping them to realize that, you know, if you learn about these conditions, you will have additional tools in your toolbox and you can help more patients.

but can you talk a little bit about your feelings on this, you know, how we treat people in a more traditional type setting and how, what people, what these conditions might need is, is different. And what do we do about that? 

Dacre Knight, MD: Well, I would say one of the clear differences is the complexity, like you just mentioned, and it, it doesn't fit into that standard model as you just pointed out, where someone goes into a primary care doctor and they've got cold symptoms, they've got high blood pressure, you can get to it pretty quick, algorithm pretty directly, and, and move on to the next patient and just start churning through patients 15 [00:14:00] minute visits all through the day.

It really just doesn't work that well in these complex cases though, where so many systems can be evolved and this symptoms can be kind of ambiguous and, and mask other things. So it, it does take the time and attention and once we get there, then, you know, we, we keep. All of those things in mind that the symptoms may be drawing out as far as as, again, as far as treatment goes.

so for example, if, let's take the most common presenting com symptoms, pain, and if the fatigue that goes with that as a se way of, of chronic pain. So if we're talking about, you know, treatments and, you know, we say that someone is fatigued and, you know, the, the general population, otherwise normal patients, who maybe had, you know, a knee surgery and has been, just recovering for a few [00:15:00] weeks and, and kind of debilitated muscle weakness and things like that.

We just get them back into physical therapy, start strengthening those and, and there's a pretty quick turnaround. the problem with the complex chronic conditions that it, it, it doesn't work like that as well as we want it to. it can work, no doubt, and, and it just takes a little bit more patience and a little more, more kind of gentle movements and, and, and time.

but when we're, when we're applying those things, we have to think about the. Again, the burden to the patients, not only, with the time when we're talking about having to travel, but there's also burdens. We, we commonly talk about costs. and so that can be included in not only the medical care costs, but the cost of transportation.

You know, cost of gasoline is going up, the cognitive load that it takes, to go through these things. So if someone is already burdened with chronic fatigue, then how do you really expect them to just jump up out [00:16:00] of their chair and, and, and start. Going about an exercise routine. So we have to keep all of those things.

So financial, physical limitations, cognitive load that is required from all of these treatments. So it's not usually the, usually the standard of just prescription and go about your day and, you know, see you again in a few months and you'll be right as rain. So we do have to have a little bit more, gentle and, and ease of care and, and appreciation of the widespread nature of the symptoms and how variable they can be and how impacting they can be.

Dr. Linda Bluestein: And as you pointed out last time, if people, which is the common scenario, right? They don't get diagnosed for usually years. And so things continue to, you know, unfold and you get more sequelae and it's even harder to untangle all of that when it's been going on for years and in some cases decades.

Dacre Knight, MD: Right? And I mean, I ideal scenario. [00:17:00] I mentioned the primary care model, 15 minute visits churning through the day if that primary care doctor is well adept at recognizing connective tissue disorders and, and notices that there's a, maybe a history of joint instability and laxity and then chronic pain.

And it's not to say that that visit can't be short either, at least as an initial visit. but there has to be that basis of knowledge to work from and, and that, you know, anticipation of seeing these patients in clinic because likely these patients are, are all throughout the primary care system out there.

just unrecognized though, and as you pointed out, can lead to diagnostic delays. 

Dr. Linda Bluestein: Okay, so let's talk about sequencing and what to do. this is a common, common problem when patients are having so many different symptoms. Everything's flaring all at once. How do you decide what to address first? 

Dacre Knight, MD: Yeah.

And that is really tricky because it seems like maybe sometimes you just wanna start everywhere once [00:18:00] and, and, and really great if you can do that. but as we pointed out in previous episodes, there's, there's likely some things that are tying together. And if we can, you know, kill two birds with one stone as far as symptoms go, and, and targeted treatment that may have improvements in other areas, then awesome.

so when we see patients come in with this wide array of, of symptoms and, and systems that are affected, then I would think about connective tissue disorders, whereby there may be dis autonomic. there may be, you know, connective tissue issues that relate to mast cell activation. And so those would kind of be at the forefront.

Now, of course, we think about all the, you know, IBS and gastrointestinal, problems and, and any other neurologic or headache problems and things like that. But usually those are the ones that, we [00:19:00] may be lucky enough to see an improvement if we get some of those first ones targeted upfront. so that's where my decision making would usually start.

So, how can I understand what symptoms are present that may be a constellation of either a hypermobility disorder or an autonomic disorder? and then what are some, you know, suitable treatments? Again, if we're talking about minimally disruptive, you know, what are some treatments that they can afford?

they're not gonna have any major side effects, that may actually improve other. Areas and organ systems. So that's kind of generally how it would start. I'd say 

Dr. Linda Bluestein: definitely, I've found, and I would imagine you found the same thing that, like you're saying, you know, you sometimes you treat the mast cell problems and then the autonomic dysfunction gets better.

So if you can address right, the whatever seems to be at the root of the problems, that's gonna be oftentimes more helpful. But there are times where, you know, like the medications that you might wanna prescribe [00:20:00] for autonomic dysfunction are gonna be a little different than what you would prescribe for the mast cell problems or a little bit different than what you would be prescribing for pain.

So in terms of factors that would push you to focus on autonomic dysfunction first, are there certain things that, you know, would make you think about that being the highest priority? 

Dacre Knight, MD: Yeah, there certainly would be. And that's again, probably a. A good understanding for what we can elicit from the patient's description of their condition.

And if I get an understanding that they feel these cardiovascular neurologic effects a lot throughout their day, throughout their week and they, you know, this severe lightheadedness that impedes them from being more physically active or maybe they've had some episodes of passing out or, or getting to the point where they almost feel like they're passing out.

Heart rate changes, palpitations, those are, those are kind of standard ones. some that are a little bit more tangential but [00:21:00] may actually still be related are some of the temperature issues, maybe even gastrointestinal issues, that can be related to that. So it's really all mixed in. but I'd probably start with some of those, the, the standard ones being, at least for an autonomic disorder means so that neurologic, cardiac, connection between heart issues and dizziness and lightheadedness is particularly with position changes.

And we were talking about upright or orthostatic. and, and so, and, and if that is something that's high on the list, then yeah, then certainly we would probably start with those treatments first. 

Dr. Linda Bluestein: Okay. have you seen problems with clinicians treating the wrong issue first? 

Dacre Knight, MD: Well, yeah. Yes, is the short answer.

I, I guess the longer answer is, you know, what are those conditions? And it ranges. I guess I would, I would say it probably ranges to the background and knowledge of the [00:22:00] clinician and what they have experience, and training in, in treating. So whether it's rheumatology, sometimes, see patients being treated for, what we would call seronegative rheumatoid arthritis, where mm-hmm Oh, your labs look normal.

They keep coming to a rheumatologist. Maybe there's a little bit of some findings on x-rays that make the joints look a little fuzzy or some erosion, things like that. Sometimes it's really hard to tell on, on x-rays though, particularly if they've got a lot of symptoms of joint issues and pain and, and swelling and things.

So that may be just an example of one area in rheumatology or. Mixed connective tissues, mixed connective tissue disease sometimes, that is treated in, in place of a inherited, a connective tissue disorder or a hypermobility spectrum disorder. And that usually leads to patients during a trial of medications like Plaquenil or hydroxychloroquine.

And, and sometimes there's improvement. we don't really know the whole [00:23:00] mechanism about that. We don't really understand the whole process of sero negative arthritis. And, and when I say that, it means the labs look normal, but otherwise they're treating rheumatoid arthritis. And so if there's improvement, great.

but we certainly don't want to miss opportunity for improvement of other areas that may be related to a hypermobility spectrum disorder. and, and so, you know, we can use that as an example for, for other areas to, so, whether it's rheumatology or, you know, sometimes patients end up in, in the pain medicine clinic and they start doing ablations and things like that, which I, I know you're familiar with.

And so, yeah. And, and, and again, those things may help, right, temporarily, but you know, what would we see long term if you're just getting ablations and injections? 

Dr. Linda Bluestein: Yeah. And I'm so glad you brought up those. Those are two great specific examples. because number one, I hear from so many people that are so frustrated [00:24:00] that their rheumatologist does not understand.

Hereditary disorders of connective tissue, and they think that, you know, these conditions, the Triad EDS or HSD pots and, m you know, should fall under the umbrella of a rheumatologist. But rheumatologists, right are trained in autoimmune. Conditions. And, there is no one like perfect house for EDS and related, conditions.

So I think that's really challenging for a lot of people. 'cause you're right, the rheumatologist is gonna look for the things that they know how to treat, right? And they're gonna treat them in the way that they know how to treat them. the pain clinician, whether they're trained in anesthesiology or physical medicine, rehabilitation, I feel like those are the two kind of primary, specialists that will do, interventional pain medicine.

They also have their own treatments that they can, can offer. So they're not necessarily looking for these underlying problems. so I, I'm glad you brought that up because the [00:25:00] rheumatology, you know, kind of mismatch of what patients perceive that this will. But I'm having all these joint problems so a rheumatologist should be able to help me.

I think that's an important message for people to hear. 

Dacre Knight, MD: Yeah, and to add to that, I think that. These conditions can almost present like a chameleon in a sense that if you are looking as a rheumatologist at it, you're going to see it as a potentially a rheumatologic condition. If you're going to look at it as a, at, as a neurologist, you're gonna maybe see it as a neurologic condition and, and so on and so forth.

you know, so that, the joke is that, you know, if you have a hammer, everything looks like a nail, but, 

Dr. Linda Bluestein: right. 

Dacre Knight, MD: And, and I think that I'm, I'm hopeful that in the future that we have a better, faster way of making more precise diagnoses, you know, quicker test results, lab results that are, you know, high sensitivity, high specificity.

And so we can, you know, [00:26:00] avoid the mismatch, e even between specialties. And I think that that would do service to lots of patients, because if we find some patients who are, you know, again, getting. In a rheumatologic example, getting treatment for sero negative rheumatoid arthritis or mixed connective tissue disease, and there isn't some improvement.

Again, it may not be full improvement. So we don't want to miss an opportunity to have better, have even more improvement, and really to complete the picture. And, and maybe, you know, we'll find that, that there are some aspects of rheumatologic treatments that do have a place in hereditary connective disorders yet, but we just, we don't know.

I mean, it, it kind of goes back to the question is why do patients improve, with. Plaque if they're being treated for this condition, which otherwise we don't really know much about. So, that's, you know, something to be determined. But again, just like I've said, we've gotta [00:27:00] keep an open mind when we're seeing patients.

We gotta keep an open mind as far as the possibilities of where we can, you know, move the needle forward. 

Dr. Linda Bluestein: And then I do think it's really helpful for, for patients to see a rheumatologist, especially if they do have joint swelling, erythema or, you know, redness, around the joints to, to get those things evaluated for, right.

And either ruled in or ruled out. Because as you mentioned last time with hi dictum two, you know that you can have more than one, condition as well. So we wanna make sure that we are, you know, really assessing for, for things, you know, properly. so, so, yeah. So do you, do you find that those labs are often helpful or do you order like a rheumatologic panel or when do, when do you think that that's valuable?

Dacre Knight, MD: That's a really good question because, you know, we can, we can talk all day about how everyone is unique and there's so much differences between patients, but by and large, [00:28:00] if we look at the most common conditions, you know, again, being pain, muscle pain, joint pain, then it's not too surprising to see where there is a lot of overlap and why, you know, rheumatologists may get involved.

Because even in though they're specializing in autoimmune disease where there's antibodies or your immune system, your body's attacking itself, really, they, they see patients with joint pain and that's kind of like their, that's their entrance, the entrance into the rheumatologist door. A as, as well as some signs of an autoimmune condition being present.

And that's, you know, where you're asking about labs and, and imaging can certainly have a role there too, and x-rays and so forth. but. For me in, in my practice of, of when to de decide to draw labs and whether those are gonna include autoimmune labs, and that may be signal of a rheumatologic disease. [00:29:00] I, I cast a pretty wide net at first, on the initial visit because it's, you know, it's better to not miss something the first go around than it is to, you know, have a, have to draw back and then, and, and recycle or repeat steps.

So casting that wide net usually does include some rheumatologic workup and, and at the very least. An understanding of the presentation of symptoms too. So we can ask questions that give us clues about a rheumatologic or autoimmune disease being present. So we usually, you know, we taught these things in medical school, but for example of like an autoimmune arthritis, it usually presents with swelling earlier in the day and it, it improves, with the day, once we start moving joints around, it kind of, you know, releases those antibodies.

It kind of dissipate and move outta the joint space. And, and it's swelling in certain joints. so we can get clues about which joints are affected, [00:30:00] that, that may be more likely autoimmune related, and hands and feet and ankles and, and the torso. So, that, that would be the initial step. And that's even easier than ordering labs, of course.

but the problem is it's, it's hard to get a good understanding of those symptoms and certainly someone can. Wake up with pain, no doubt about it. And does it get better through the day? Even without an autoimmune disease, that's also possible. so that's why I still do want to cast a wide net, as long as it's, again, not too much of a burden to the patient, you know, it's not gonna set them back financially if I draw some extra labs that would screen for autoimmune disease, and in doing so.

There's again, kind of a sequence if we're talking about in that sense of steps that I would take as far as labs go. So there would be initial labs that are better for screening. So they, again, we talked about having a high sensitivity. so they're, they're good [00:31:00] at capturing anything that's present and not missing something at present though, although they do also have a eye higher rate of, being falsely positive.

But it's better to catch it than not catch it. And so those things include things like, you know, we had mentioned on previous episodes, so anti-nuclear antibodies, a NA and maybe some of the rheumatoid arthritis, labs that are pretty simple and easy to get is rheumatoid factor. And, and, and then, and then we can decide are there other presentations of specific autoimmune diseases, whether we're looking at lupus or Sjogren's or mixed connective tissue disease and things like that.

And then based on their presentation history, do we want to add those labs in as well? 

Dr. Linda Bluestein: Excellent. And yeah, I'm glad you brought up about the false positives with a NA because that is so, so common. I have had positive a NA, you know, intermittently, and I know so many of my patients have, and it, it can be confusing.

so I'm glad you brought up about that. You're [00:32:00] looking for high sensitivity and you don't wanna these la with those labs, you're not, you're looking to not miss something. You're casting the wider net. I think that's a great description. 

Dacre Knight, MD: Yeah, exactly. And, and when it comes positive, it's likely gonna be positive again, on future lab draws.

Just, you know, so patients are aware. It wouldn't be su too surprising to see that again. You know, why, if someone would repeat the tests. A good question. I don't really know in every case why someone repeat an a NA. I would say that sometimes we do repeat it because we add other labs with it, like other inflammatory markers and things like that, CRP to get a better of assessment, even if it was positive, but kind of ruled out in the past, maybe we didn't get a full picture of what's going on.

So we want to add some extra labs to it and be done with it. And usually this is, this is not something that needs to be repeated every year. If we can rule it out, and then we can make a diagnosis of a hypermobility spectrum disorder or something akin to that, then we can get on with treatment. and of [00:33:00] course that's not to say that someone can't get rheumatoid arthritis, you know, a decade later.

so we do just kind of have to be mindful again, of patterns and pattern recognitions of symptoms and presentations. So, but it's, it's not. Likely that, likely, you know, that that would happen any more than what we would see at the frequency of the general population just having an inherited connective tissue disorder.

Dr. Linda Bluestein: Okay. that's, that's all great information. We are going to take a quick break and we come back. We are going to talk about some of the pitfalls that we see and some key questions for clinicians. So we're gonna take a quick break and we will be right back with Dr. Knight.

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Dr. Linda Bluestein: Thank you so much for listening to Bendy Bodies.

We really appreciate your support. It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again and enjoy the rest of the episode.[00:35:00] 

Okay. We are back with Dr. Knight, medical director of the UVA EDS center, and we are talking about kind of the big picture when it comes to treatment and what are some of the things that we want clinicians to be thinking about and what are some of the ways that we approach these conditions that, might be helpful for, for other clinicians.

So, in terms of physical therapy, I think it's no secret that physical therapy can be super helpful for hypermobile patients. But it can also be harmful if it's not approached correctly, and if we have a therapist that's not, you know, able to individualize their approach and things like that. So do you approach physical therapy differently for hypermobile patients, or do you have recommendations that are, that are different?

Dacre Knight, MD: A hundred percent. And I can't tell you how many times I hear what someone say. As soon as I say, well, physical therapy is usually recommended. Like, oh, I've tried physical therapy. It was terrible. And so [00:36:00] we, we want to appreciate that at least to start with that. Like, okay, we recognize there are limitations.

You know, we, we, you know, probably tried to do too much too soon in the past or, or just really not understanding that there was a diagnosis present then that could be related to a connective tissue disorder. So, When it comes to the, the next steps, yeah, it takes a certain amount of counseling and reassurance, but I have not yet had any patients who have seen one of the physical therapists that I work with that are very knowledgeable about EDS and HSD to have that same response that, you know, it was, you know, it was terrible.

It would wipe me out. It was so painful afterwards because, and, and I've worked with these, physical therapists, I know that they are very mindful of. Where to start and where to meet patients as far as [00:37:00] what their abilities are. And it's definitely better to do too little at first than to do too much.

I mean, as, as part of the, the, the confidence and the trust of the patient at, at the very least. Right. And because if what we have in mind is long-term improvement, it starts from the very beginning because we really want to gain that trust and it's so critical. 

Dr. Linda Bluestein: Yeah. I think that trust is a, is a really, really crucial piece.

And sometimes, you know, we have these patients, they, they look quite healthy, so they will go in for an appointment and the therapist thinks, oh, well they certainly will be able to handle this load. And so yeah, absolutely. Starting, starting low, going slow and really, you know, listening to the patient.

And I think another important part of that is for the patient to give that feedback back to the physical therapist. 'cause a lot of times when I've, 'cause I've had a lot of. Tell me physical therapy doesn't work for me. And I said, well, did you, did you go back and did you talk to the therapist about. [00:38:00] What happened that that was way too much.

I, you know, I ended up injuring myself or whatever it was, and understandably, a lot of the times they didn't go back. So that therapist, number one doesn't learn for their own, you know, career. Like, they don't learn about, oh, well I did too much with this one particular person, so maybe in the future I should be more cautious.

And two, they're, they don't have the opportunity to improve the plan for that specific patient. So I do think that when people are able to do that, it's very important that they, that they do that. But like you said, the trust piece is so, so important. So you also have to kind of trust your, your gut in terms of is this somebody that, you know, they just, you know, prescribed a little bit too much, but they're, they're going to modify their plans or are they too rigid in their thinking and they're not gonna be a physical therapist that really is gonna be somebody that I can work with long term.

finding that fit, I think is, can be hard. 

Dacre Knight, MD: Well, that, that's exactly right. It's, it's got to mesh well and [00:39:00] it, and it's, the therapist and the patient have to certainly be in sync and it's, it's part of the whole treatment process because I'd say the, the best scenario is a case where, yeah, you pointed out a hundred percent that the physical therapist will be open to receiving feedback and the patient will give feedback and, and then with time that, that's tailored to that individual patient.

And then the physical therapist is aware to look for improvements or lack of improvement and where to kind of shift the direction of the therapy. So that's, that's really the most ideal. Course of physical therapy where it is engaged in both directions and also, maintained to a point that the physical therapist can use their experience and their skills to change treatment or shift it if they need to, just based on how the progress is 

Dr. Linda Bluestein: going.

I'm curious to get your thoughts on this too. So I think. For, [00:40:00] for, in my experience, one of the most frustrating things about physical therapy in patients with EDS and HSD is the insurance model of, you know, you, you have a problem with your ankle and so we're allowed to treat your ankle. You know, we do, we're gonna do scoring of, you know, how functional or dysfunctional this body, this particular body part is, and then we're gonna assess that over time.

'cause we want, you know, the insurance company wants to have these metrics, right? And you need to be improving enough, but not too much in order to get more sessions approved. Right? So, so, and, and then, and then people with EDS and HSD are gonna have something different, you know, maybe their ankle is doing better, but now that threw off their shoulder or their hip or, you know, so, so to me that, that is a big part of the problem is the, in the way insurance covers physical therapy.

Dacre Knight, MD: That's an excellent observation and it, it couldn't be more true. I mean, it's just such wacky world that we live in, in a medical health insurance world and, and what we have to do to, [00:41:00] to work around it or adapt to it. But yeah, you're a hundred percent, I, I, I see these cases all the time as patients say, well, you know, physical told me we're only working on the ankle today.

Don't even, don't even try to mention your shoulder or, your kneecap or something. But, but yeah, you, you are absolutely right. That part of the therapy may well, will certainly involve other joints and, and muscle groups and, and there may be, you know, favoring one group or the other that leads to different effects.

And so, it's, it's, yeah, a hundred percent accurate. We, that we've, you've got to keep all of those. Regions in involved and in mind and to, to treat and, and, and how, how we, you know, kind of sneak around the insurance barriers that, you know, that comes with time and, and experience. And every insurance provider's different of course.

So where their limitations lie may change. but, [00:42:00] but usually a, a good physical therapist is aware enough to at least, you know, say, okay, well, you know, we're, we're working on the ankle, but we know that this, you know, your, this muscle group could potentially be involved. So here's some things that you can take with you to kind of work on.

And, and that's what we'd like to see a physical therapist and be able to deliver those resources that are ultimately just going to improve them overall. 

Dr. Linda Bluestein: And, and your point about change over time is. Also super important. I was in physical therapy for my shoulder, and then I injured my foot, so they opened a second case.

So I was literally, I would go in one day to have my shoulder treated. I would go in another day to have my foot treated. So talk about tra, you know, I'd have to take extra transportation time, of course. but my, but at that point, this clinic still covered, still, still accepted, you know, my insurance payment.

And then they dropped my insurance as one of their, as one of their, you know, insurances that they would cover because the insurance company dramatically dropped what they would [00:43:00] reimburse the physical therapist for. And I know the, the owner of the, the entire like, chain of clinics and he's like, I could not keep my doors open if I would accept.

Insurance payment from this particular person. So, it can be, it can be really challenging from the standpoint of, you know, trying to run a physical therapy practice as, as well because of the way things change over time. And, so I've ended up like going outside of my insurance and that way I can have somebody address whatever it is that's bothering me.

But I recognize that I'm extremely fortunate in order to be able to do that. And most people do not have that, that ability. but that also sometimes leads them to other options, which I think could be super beneficial. Like Pilates, gyrotonics, Kinesis, you know, working with movement specialists that are, you know, maybe not physical therapists, but that maybe it's more affordable if your insurance doesn't cover a lot of physical therapy anyway.

If you find someone with the right expertise. do you have certain other movement therapies that you find to be [00:44:00] particularly helpful? 

Dacre Knight, MD: I think you just, you hit them and, and, and I, I love it when I hear patients may already be engaged in them and, and sometimes they are just by, by chance. and, and there is actually a physical therapist I work with who, was a.

I, I don't know what the levels of training are, but Pilates was her kind of method of delivering therapy, and that's great. Pilates is fantastic. I know a lot of former dancers, like yourself may be into Pilates and, and I, yeah, I don't, I've never really learned what's the matchup there? Is it just because it's similar type of movements?

Dr. Linda Bluestein: So, so Joseph Pilates. originally was a, was a dancer and he originally developed Pilates, for hospitalized patients using like the hospital bed. And yeah, but there's, there's a huge connection there. I think a lot of dancers get introduced to Pilates and it, and it appeals to them for, for a variety of reasons.

And [00:45:00] yes, I know a ton of dancers who then, you know, later become Pilates instructors. It's a very, that's a very common, yeah. Yeah. 

Dacre Knight, MD: I, I knew that I, that's right. I didn't know that exact issue, but I knew there was some connection there, so, yeah. And, and this can certainly be a, a resource among other types of movement, therapies that we have patients sometimes who would say, you know, I, like you gave the example, the insurance runs out or won't cover it.

And then they kind of reach this fright that I'm not gonna be able to receive any more treatment and I'm kind of at the end of the road. But if we can at least engage in some of these other movement therapies. With or without someone guiding them. Obviously it's much better if there is someone as a trainer to, to help guide and learn the specific movements of direction.

But it's also not to say that patients can't learn those themselves once they've worked with someone, or, you know, get some other ed area [00:46:00] ways to be educated on, on those. I, I know there's a lot of gr great movement therapists out there that are connected to the world with EDS and the EDS society and, and so I've written books, they've got webinars and things like that.

So any number of ways to, to be engaged and, and really when it comes down to it, something is better than nothing. So that's again,

starts. Consultant or physical therapists at least to get them into place where they feel comfortable and they feel confident to engage in some of those movement therapies. but it, it's really important, for them to, to be engaged and because, you know, we, we definitely do want to get them in a place where they're comfortable doing it and, and confident that, they can do it correctly.

Dr. Linda Bluestein: Yeah. Kinesia phobia, fear of movement is such a real thing. And I remember when I was writing my first article about [00:47:00] hypermobility, joint hypermobility, connective tissue disorders and pain management, and I hadn't really come across the word before and I saw the word kinesia phobia, and I thought, oh my gosh, that's exactly what has happened to me, and I'm trying to, to get over.

because it can be so challenging if you hurt yourself doing, you know, small things then, and, and so many movements. Feel uncomfortable to you. It can be very, frightening. So I think that, like you said, you know, working with a movement therapist of, you know, whatever type, if you have a good rapport and if they are a good listener and they really recognize the person in front of them and customize their treatment plan for this person, is this somebody who, you know, needs to be encouraged to do a little bit more?

Or is this somebody who really needs to be kind of held back and kind of given permission because they tend to push themselves too hard? I think is key. 

Dacre Knight, MD: That's it. And because really you do want to start somewhere. And, and so [00:48:00] knowing where that patient is starting as it is kin phobia, the fear of movement, it may be tied to one specific movement, but then that means that that downstream effect is that you kind of stop global movement and movement in other areas for fear of triggering the same thing.

whereas you can actually potentially move other areas and that may even improve the area that is deconditioned or more painful, as a response. So we're, you know, building muscle and all the whole, those, the whole biological process of, of building muscle or breaking down muscle and rebuilding it, it, it, there is a healing effect from that.

Dr. Linda Bluestein: Definitely. And what do you think about, you already mentioned like there's, you know, webinars and there's all kinds of, like, virtual options or, remote options, video options and things like that. What do you think about the balance of that versus doing things in person? When do you, I guess when do you think that it's really essential for someone to be working with someone one-on-one [00:49:00] in person?

Do you think there's times where that really is, a necessity? 

Dacre Knight, MD: There certainly are, and again, it's, it's meeting the patients where they are. And, and I have patients who are, really debilitated. They're wheelchair bound, bed bound and things like that. And I've actually come upon this service recently.

I wasn't aware of it and I really didn't know that they, that we, even in practice of it. But there are some physical therapy groups, at least I've been knowledgeable about in our region that go to patients' homes and will provide, and I, I know they do it, you know, geriatric care and, and you know, patients who have had major surgeries and things like that.

But for the EDS and, and hypermobility community, that's can, can be a huge, lifesaver. because if, if they're in such a condition that it really can't even get out to see someone, someone coming to them, it could be [00:50:00] a really great option. now understand that, that that is, you know, limited to only certain geographical areas.

So back to your question is when they meet, want to meet in person with someone when they want to come in and that's usually always the best place to start, one-on-one. That's why I. A lot of our visits, almost all of our visits are in person initially, and we want to see, you know, how the patient looks and, and how their body moves and, and, and how we can get a close exam on it.

And so, and that's, that's usually the ideal situation. But, you know, seeing that there are, are other limitations and whether it's insurance or whatever, if it's something that can be done by video or something that they can do themselves online or through online programs and webinars. And again, something is better than nothing.

So, you know, by all means, go for. 

Dr. Linda Bluestein: Some of the things for us, I feel like, you know, looking for [00:51:00] genic papules or atrophic scarring or, you know, soft, velvety skin, like you have to touch their skin obviously in order to see if you, if you think it's sucked. And, and, and, and it helps to have touched a lot of people's skin in order to, you know, 'cause that's obviously a very, yeah.

Yeah. So, when it comes to, to, seeing a, you know, a physician or a, somebody who might be making a diagnosis, that is, I think, an essential thing to do, whenever possible. So. Okay. when it comes to, hypermobile EDS in, in particular, 'cause, you know, we know that the majority of people that have EDS, that's the much more common, subtype of course, and HSD pots, mast cell activation disorders, et cetera.

what does getting better actually mean? 

Dacre Knight, MD: That's great. And I, I really like that because this just is a, is a running theme that this may be different for everyone, right. And the presentations and symptoms may be different. so [00:52:00] what are our goals? And those may be different. And that's why we bring in what I mentioned another occasion is what we call now shared decision making, where we have a goal that applies to the patient and is also the patient's goal, rather than us just saying, oh, we're gonna hit this metric and do whatever it takes to get there.

You know, that amounts to then is, seeing really if our, if our mission is to deliver function and get the patient going and active and really ultimately just having a higher quality of life, then we need to understand. What brings them quality of life? What do they enjoy doing? Do they like working? Do they like ice skating?

Do they like, you know, painting? And, and so how do we target that? I mean, you know, love if everyone could go out and climb a mountain, but I, you know, there, there's lots of people that [00:53:00] are very good help that won't go out mountain climbing. So why would we even bother shooting for that, right? Let's just go for something that fits them, that fits their, their wishes and their desires and, and what's achievable.

Dr. Linda Bluestein: No, I think those are, those are really, really great points. And I was told when I was in, in my. In my worst situation and feeling just really, really terrible. I had a colleague who had a pain management practice. I was working as an anesthesiologist in the operating room, and this colleague of mine said to me, you know, a lot of patients make the mistake of thinking that they need to get the pain to go away and then start doing what they love again.

But really, if you can, you wanna start doing what you love and reincorporating that, even if it looks different for a while. yeah, and, and starting to try to get more of a, quote unquote, normal life back so that the pain doesn't take over your whole life. I mean, it, it was, it was for me, it had really had taken over my whole life, and I'm sure you've seen that a lot.

Dacre Knight, MD: I see it a lot and I hear about a [00:54:00] lot. And I'm just gonna have to go way off on a tangent here and give a plug for Oprah's Book Club because I'm listening to an audio book right now. It's fantastic. It's called The New Earth. And it's exactly to that point you just made, which is, you know, what are we expecting to find joy from?

Are we expecting to find joy from the things that we do from them? Or are we gonna find joy from doing them? And, and, and the ideas that we focus on finding joy or improvement in doing the things rather than having completed the things, then I think we're gonna be much better off because we're not going to have mis met expectations.

Well, I've done this now and I should feel better and I don't feel better. Why not? It's not giving. To me, what I want it to give to me. so again, I think that can go with treatment, it can go with physical therapy and go to exercise, to the point that doing those things at a level that is comfortable, and I don't know that physical therapy should really bring anyone joy, [00:55:00] but at least doing, doing it in a way that you're comfortable doing it and you're, you're satisfied with the process of it all.

I think that that will meet a higher or better response than, you know, just like grinding through it and be like, I did it. Now what? You know, what else is there to do? You know? So, and it doesn't have to just be physical therapy, it can be other methods of treatment, you know, it can be mind body therapy, it can be, you know, just any, anything else that, that you find comfort doing, that is, you know, meant to improve your condition.

Dr. Linda Bluestein: Yeah. I, I love that. And how do you set expectations with patients that are honest without taking away hope? 

Dacre Knight, MD: I think that that ties in exactly what we're, we're just talking about. because the expectation that we want to bring is that, and, and what we want to achieve is ultimately improving quality of life.

and, and so there's so many different [00:56:00] ways to approach that and, and to see what that is exactly. and so I. Would like to say that, you know, as I, you know, get to know patients, and understanding what they enjoy doing, what are their hobbies? It's usually one of the first things I ask patients and they usually kind of give me a funny look, why you didn't even bother us?

Gimme that. Or, or, you know, maybe I did have hobbies one day, but they're far gone, from where I am now. but not only hobbies, but you know, what is it that you like to do and what do you enjoy doing? And, and what is it that's causing you to, be obstructed from doing that? And so, the expectation then accordingly is that we want to get to a point where we can do those things that you enjoy doing.

If there is still some subluxations that [00:57:00] happen from time to time, that's okay. And if we're able to get to the place where we are making improvements. Then that generally what we see cycles upon itself more improvement, begets more improvement. So just the act of doing it can help over the long run period.

And, that's, so that's the starting point, is at least just let's take small steps. we, we talked to the beginning, this episode about magic treatments and, and we don't have those magic treatments. We don't want to promise the magic treatment right from the beginning because that's definitely gonna be a sorely missed expectation.

But maybe the patients will see some magic in the process as they're going about it. If we set those expectations accordingly. If we start low, we go slow. And, and even with those, those goals of treatment, if we have a, you know, a small goal that we can work towards in the short term period, we can usually achieve [00:58:00] bigger goals of the long-term period.

Dr. Linda Bluestein: Yeah. I, I think those are all, all very consistent with what I've experienced, both personally and professionally as, as well. You wanna just start things going in the, in the right direction and, and that can just, like pain can beget pain, right? So once you start having something in pain, everything else starts to hurt.

okay. So for clinicians, how can they avoid overtreating symptoms while still providing adequate support? 

Dacre Knight, MD: I think this is a, a common problem and it's, I would venture to say it's more common in the practices where they have less time and less attention to what may be underlying issues. And, and we see it.

you know, far and wide in, in so many areas. So can use an example of someone coming into, I used to work as a primary care provider straight outta residency, and, and we talk about, you know, appropriate treatment guideline, based [00:59:00] treatments. And, you know, someone's got a cold in a short amount of time and, you know, in a, in a lazy response, you maybe just be thrown antibiotics, you know, you just take your antibiotics, go away, move on to the next patient.

And there's so many things that, that go wrong with that. not to mention big satiable problems where we end up with antibiotic resistance and things like that, but it's the same thing. I would posit that there is with a patient with hypermobility spectrum disorder, that comes in with, you know, back pain and we just, you know, give them some medication that's gonna wipe away the pain.

There and, and now. But, ultimately back pain comes back two weeks later and then now it's associated with knee pain and then where we going to do stronger medication and, and keep running through that cycle. So we really have to do our due diligence that first visit. And it may take more time, but it's a better investment for ourselves as providers over the long run and for the [01:00:00] patients themselves of, of course, too.

So, I, I think that's where we have to kind of draw the line between just treating symptoms and understanding what may be the underlying causes and mechanisms involved. And even if we don't understand every single exact mechanism of hypermobility disorders or mast cell activation or pots, 'cause we don't, there's still a lot of mystery to it if we can at least recognize that those may be present.

And then if we can. Tailor the treatment to target an underlying root cause rather than, you know, putting on the so-called bandaid, I think we'll find better, better overall outcomes. 

Dr. Linda Bluestein: And how can patients tell the difference between a thoughtful treatment plan and a reactionary one? 

Dacre Knight, MD: I would like to think that in most cases, provider would be describing the treatment process and the processes that they go through to arrive at that treatment.

And, you know, in, in terms that patients can understand too, of [01:01:00] course. So just throwing out a bunch of medical jargon and say, here's your treatment. I, I wouldn't say that's acceptable. I, I think, we usually, in, in the course of a good clinical visit, invite feedback from the patient and understanding from the patient that you know, what they, that we as providers tell them that they grasp and, and they can kind of summarize it for us so we understand that they grasp it.

And so I think that's what patients would want to look for, to look for a provider at giving them the opportunity to summarize their treatment plan and, and why it's there and, and what it's intending to target. And, and to make sure that the patient's target their goal is in line with what we would call this shared decision making process.

That, that the provider has kept their goals in mind as well. 

Dr. Linda Bluestein: That makes sense. and yeah, it just can be so, so challenging and so it's so great to, for people to have this information for, for both patients [01:02:00] and clinicians to be able to, you know, hopefully get improved care in the primary care setting because, you know, these patients are in.

A lot of special specialists offices, but the primary care really should be the person who is able to, you know, recognize, like you said, recognize and at least provide some introductory, tools and things so that patients can get care, you know, locally, when possible. And then if they need to for some of the more, you know, complex things.

But, you know, it's, it's a shame that most people need to go someplace else, even for some of the basic things, I guess is what I'm saying. Yeah. 

Dacre Knight, MD: Yeah. And I would like to think that in due time, primary care doctors are gonna be more, more knowledgeable about these conditions, and we're not there quite yet, but awareness is growing, the science is growing, and the educational resources are growing.

And so I, I would like to think [01:03:00] with time, primary care doctors will be more knowledgeable and I, I think what we would see then at that point is that they are more open to. Considering some of the treatments themselves. I mean, it's, it's not so far out of reach of, of a primary care doctor really. And it, it's just a matter of, of having some basic knowledge behind it.

And, and, you know, I, I can't say it so easy because I, I've been doing this for years and I haven't really figured out everything. but I, I could say as my background in a primary care doctor, this wouldn't be so farfetched to think that some of the, at least common initial starting points of treatment could be available in a primary care setting.

Dr. Linda Bluestein: Yeah. That really helps to have your, your perspective because I'm, I kind of function as, as a, you know, quarterback or primary care now for, for my patients that, you know, I might. Be treating more so their pain, but then they'll be asking me about other things, not, not, not treating their, you know, UTIs and stuff like that.

But I think that, [01:04:00] having your perspective on the realisticness of, if that's even a word of, you know, having primary care doctors starting to really, you know, recognize these conditions and be able to offer some type of, treatment, I think is really, you know, helpful. 

Dacre Knight, MD: Yeah. It's interesting to think about what, what is medicine gonna look like in the future?

And, and certainly, obviously we're here today talking about EDS and, and HSD. How is that going to be involved between specialists and primary care? If we do get to a point, like I mentioned, where primary care doctors are more knowledgeable, there's, there's also primary care models out there and, and maybe this is really good thing for a future episode too, but primary care models that are so overburdened where they have incorporated AI into their practice as much as possible to kind of help facilitate patient access, where otherwise there's limitation of providers and primary care doctors, but [01:05:00] there are some AI tools that can be used to garner information from patients and their medical history and kind of synthesize that for primary care doctors so they can run through some of those things more efficiently.

And, and so what does that look like in EDS and HSD? I don't know. It's a good question because these are very complex conditions too. Is it too complex for ai? I don't know because we haven't tried yet. I mean, there are some things and tools that we are looking at to use, at least in the research space first.

but does that, mean that we are able to, open those doors up to the clinical space too? So, you know, time will tell and, and these technologies are, are evolving so rapidly. So it's, you know, really, you know, time will tell, but it may not be much time. It just may be a matter of months or years that, you know, we can see things change quite rapidly.

Dr. Linda Bluestein: And I feel your hack coming on here. this is, you know, I always end with a hypermobility hack. And are any of these tools that you're mentioning, things that, [01:06:00] patients could access now themselves or are they things that the clinic has, employed and then they have to like share it with the patient and then the patient fills it out?

Dacre Knight, MD: So this could be a, a great hypermobile. So thank you. Because I had not thought about this ahead of time, but, but I, yeah, so the short answer is yes. I think that these are tools that can be available to patients here and now, and I think they are adequate because, you know, going back to some of our previous conversations when we talk about what a patient would want to do to prepare for a visit, and I mentioned like taking notes or jotting down things on your phone, totally open to that.

I love it when patients do that because I know that I'm gonna meet all of their marks that they had anticipated and we'll have a chance to go through those. And it's not something that comes up after the visit. But taking that a step further, and I've had patients do this already, if you want to, you don't have to, but you can take some of those notes.

You can add a little bit of your history and you can put those into one of these, you know, whether it's chat GBT or Gemini or, you know, [01:07:00] pick your favorite large language model or, or, or, or chatbot and, and. And run it through there and, and get a summary and, and see if that fits your description of your condition.

and, and sometimes it, you know, puts things in easy to rid format and, you know, bulleting and, and bold lettering and things like that that may be useful to the provider. So, no harm in doing that. And, and. And certainly in the case where you're going to see a provider, because the downfall we see with AI tools and, and really just anything you read about online is that patients take that upon themselves to just kind of jump to treatment that may be unsafe or, or may be incorrect.

So as long as you're going into a provider, I think it's totally safe and and kosher to do that. 

Dr. Linda Bluestein: Yeah, I love that. And I, I've had a lot of patients who did exactly what you said, and then the AI tool helps them organize the information so that they have, you know, bullet point, you know, you know, concerns and symptoms by [01:08:00] different system.

And of course that helps us to be able to see that. So actually I'm seeing somebody later today that did that exact, you know, you could just tell, right, that it's AI generated that they have this, it is like, that's great. That's gonna help me. It helps you. So, yeah. Yeah. I love that hack. 

Dacre Knight, MD: And it, it's funny, the patients are kind of sheepish when they do it.

Like, I apologize. I'm sorry, Deb. I'm like, oh, it's great. It's actually a very easy to read summary and I appreciate you taking the time. So, yeah, it's just fine. 

Dr. Linda Bluestein: Yeah. That's a great hack. okay, well thank you so much. This has been a great conversation as always. can you share with people just a little bit more about what you're doing at UVA and where they can learn more about, about you and about the clinic?

Dacre Knight, MD: What we're doing is I, what we're hoping to do is get all of these things right, that we just spent the time talking about today. So shared decision making, targets of treatment and all those things. There's a lot, there's a lot going on. but at least for the time being now we're building the team of providers and staff that are all on the same page [01:09:00] with these, with this message too.

So we meet regularly and we discuss patient cases and, and I think that's really what is ultimately in, in best service to patients because we know that the best outcomes are delivered through multidisciplinary care. So we obviously need to build those bridges. So that's what we're, we're doing at the University of Virginia EDS Center.

Having said that, we want to not only deliver on patient care, but we want to advance the science and, and make groundbreaking discoveries as we can. So, that's all to the importance of delivering better treatments. And maybe we will get back from what we discussed in the beginning of this episode, a magic treatment one day.

So that's, you know, all to the purpose of, of working in that magic, to find patients in a good place that they can all live, you know, high quality of life. 

Dr. Linda Bluestein: I love that you have those multidisciplinary meetings because, you know, we, we all know like cancer conference, you know, they'll have the, the, you know, the radiologists and the general surgeon and you know, [01:10:00] all the different people that are ne oncology, et cetera.

you know, all there to discuss one particular case or a few cases that, that week. So I love that you're doing a, a similar thing for EDS. That's fantastic. 

Dacre Knight, MD: It really works and, and, and, and we find joy in it because otherwise we'll be scratching our ourselves, you know, scratching our heads alone and, you know, you kind of feel lost in it.

And, and so having that kind of team model is, it's so supportive. 

Dr. Linda Bluestein: Mm-hmm. Mm-hmm. Okay. All right. And so in terms of where people can find you, where, where do you see, because I know you are, you're not super active on social media, but you are on. Right. Are you on any other platforms? 

Dacre Knight, MD: Yeah, that's the, the main one.

I'd say. You know, I, I, I, I get so busy checking my emails day in and day out. I just really have a hard time keeping up with it. But, I'm glad that you've got this platform out there. So that takes away some of my, my, efforts to have to try to get the message out there to others, which I, I think is [01:11:00] so critical.

So, yeah, I'm on X and, and LinkedIn, although I, I, I haven't been looking for a job and I won't be looking for a job anytime soon. we are hiring, but I think we've got pretty good place that we've found all that individuals at this point that we want to hire maybe some more down the road. So maybe keep an eye out on LinkedIn if we've got other job opportunities coming up, because that can certainly be the case because we are growing very quickly.

Dr. Linda Bluestein: Amazing. That's, that's, that's great news that you have people in the pipeline that, that you think are gonna fill some of those positions that you were looking to fill. So that's fantastic. That's exciting to hear. It's very 

Dacre Knight, MD: exciting. We, we've got a lot of work to do, so we need them here yesterday. 

Dr. Linda Bluestein: Yeah, yeah.

Exactly. Exactly. That's wonderful. All right, well thank you so much again for taking the time out of your busy schedule to chat with me and, I really enjoyed our conversation. 

Dacre Knight, MD: Yeah, it was great, Linda enjoyed it as well.

Dr. Linda Bluestein: Well, I really enjoyed having another conversation with [01:12:00] Dr. Daker Knight, who is medical director of the EDS Center at UVA. And I wanna thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional. Education, clinical insights and resources in my newsletter, the Bendy Bulletin, which you can find on substack@hypermobilitymd.substack.com.

You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood. And don't forget. Full video episodes are available every week on YouTube at Bendy Bodies Podcast.

As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them. You can learn more about these options on the servicesPage@hypermobilitymd.com. You can find me Dera Linda Bluestein on Instagram, Facebook, TikTok. X and LinkedIn all at hypermobility md.

As part of our collaboration with the UVA Ehlers-Danlos Syndrome [01:13:00] Center, we also wanna share some of their helpful resources for questions or appointment inquiries. You can contact the UVA EDS Center at our UVA EDS center@uvahealth.org. Again, that's the letter R as in Robert uva, EDS center@uvahealth.org.

You can find answers to common questions at uva health.com/support/ EDS slash faq. Our incredible production team is human content. You can find them on TikTok and Instagram at Human Content Pods. As you know, we love bringing on guests with unique perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy bodies team.

Although we may share healthcare perspectives on the podcast, no statements made on bendy bodies should be considered medical advice. Please always consult a qualified healthcare provider regarding your own care. For more information about the Bendy Bodies Program, disclaim and. Ethics policy, submission verification, licensing terms, HIPAA release terms, or to get in touch with us, please visit bendy bodies [01:14:00] podcast.com.

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