The Biggest Mistake in EDS Care and How to Fix It with Dr. Ina Stephens & Dr. Dacre Knight

[01:15] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in Ehlers-Danlos syndromes, here to help you understand your bendy body and live your best life.
[01:28] Today's episode is one I've been looking forward to for a very long time, and it's one you'll want to listen to all the way through. We're talking about what it truly takes to build meaningful, evidence-informed care for people with connective tissue disorders like EDS and HSD. And we'll be sharing some exciting news later in the episode about a collaboration that has been years in the making.
[01:48] I'm joined by two incredible leaders in this space: Dr. Ina Stephens, interim medical director of the University of Virginia Ehlers-Danlos Syndromes Center, and Dr. Dacre Knight, Medical Director of the UVA EDS Center. Today, we'll explore how the UVA EDS Center came to be, what makes it different, why integrative and early care matters so much for people with connective tissue disorders, and how education — both inside and outside medicine — can change lives.
[02:17] Make sure you stay with us until the very end. We're going to formally announce a new partnership that brings together academic medicine and global patient education in a way that has the potential to benefit patients worldwide. As always, this podcast is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. And trust me, you won't want to miss what's coming. Here we go.
[03:19] Well, I am so excited to be here with Dr. Stephens and Dr. Knight. I feel like on the one hand, this conversation is super timely, but at the same time, it has been such a long time coming. Thank you so much, Dr. Stephens and Dr. Knight, for joining me on Bendy Bodies today.

[03:36] Dacre Knight: Thanks for having us.

[03:38] Dr. Ina Stephens: Yes, thank you, Linda.

[03:39] Dr. Linda Bluestein: Absolutely. So, Dr. Stephens, I want to start with you. We're going to be talking about the UVA Ehlers-Danlos Syndrome Center, which is such exciting news. How did this initially come together?

[03:55] Dr. Ina Stephens: That's a really good question. I am a pediatric infectious disease subspecialist, and I also am subspecialized in integrative medicine. Over the years, I have developed a number of different subspecialty clinics, including the autonomic dysfunction clinic, the infectious disease clinic specializing in patients with long COVID, the diagnostic dilemma clinic, and the integrative medicine clinic. And you could only imagine the patients that are referred to these types of clinics. They are patients that most pediatricians are questioning: what is going on with this patient? This patient has been seen by multiple different subspecialists. They don't know what's going on. The pediatrician doesn't know what's going on. So they're kind of sent to my clinic as a — what is happening here?
[04:49] This started probably about 10 or 12 years ago. I just started noticing that many of these patients were hypermobile. I will say — and this is not any HIPAA issue — but I myself have EDS. My family has it. I'm very familiar with it, familiar with the comorbidities. And I was just recognizing all these patients are coming in with hypermobility and multiple comorbidities. Once you start collecting these patients, they just keep coming. They come self-referred, more referred. So I now have a very large following. With that being said, I've had a lot of positive feedback and a lot of very generous help and a lot of encouragement and enthusiasm to start an EDS center here. And that's what I decided to do.

[05:40] Dr. Linda Bluestein: And before you started this center, you knew that there needed to be some change. What kind of experience were patients having — other than coming to these other clinics that you had started — what did the picture look like before the UVA EDS Center was formed?

[05:54] Dr. Ina Stephens: The one thing I really want to emphasize is that a lot of these patients came through the integrative medicine clinic, and many patients don't know what integrative medicine means. My approach to patient care has always been this holistic approach. You really have to work on healing the patient. You have to work on finding what is the underlying reason — why do they have these problems?
[06:26] So much of medical care and so much of what has happened to a lot of these patients is they've gone to a physician — and rightly so — and they've been given a treatment for their problem. But it's been like one treatment for one problem. I kind of say it's been a Band-Aid put on that problem. And they still have another whole host of problems. Why do they have that problem?
[06:49] The integrative approach is looking from the ground up. How did you get here? What is the underlying problem? Is there a cohesive string that's bringing this all together? And how can we work to heal the patient? Integrative medicine to me is really using the very best of conventional Western medicine. I mean, I'm an infectious disease specialist — you will get vancomycin if you need it. But there are so many other modalities that can really be used to heal the patient.
[07:25] And that's really taking in so much of their lifestyle. You've talked about this so much on this podcast — really healing the patients and helping them understand how they can work to make their whole bodies and their minds and their whole persona healthy, so they can deal with this illness or the symptoms. So naturally, it kind of made sense in the integrative medicine setting. We work on healing them, and whatever modality they need — whether it's more conventional or more complementary — they're going to get, in my view, what they need and the best of both.

[08:11] Dr. Linda Bluestein: I love that. When I started my first clinic in Wisconsin, it was called Wisconsin Integrative Pain Specialists, because that integrative approach was exactly what I was doing. So we're going to talk about that more in a little bit. Dr. Knight, I am so curious to hear from you about what drew you to building this EDS center at UVA.

[08:35] Dacre Knight: Well, I think just hearing from Ina should be explanation enough — knowing that she's here and blazed all the trails and got everything in place. That's been a real gift, to have someone who is already knowledgeable about the system and knowledgeable about the care of patients who require a lot of direction in an integrative approach, a whole-body approach, a multidisciplinary approach. We know all those things are best for patient outcomes. So that was it.
[09:12] The opportunity to expand on the research programs that we had developed over prior years is a real great opportunity, and really just to expand care and access for EDS patients up the East Coast. That was very enticing.

[09:27] Dr. Linda Bluestein: Yeah, the opportunity to work with Dr. Stephens had to be really enticing. And in terms of gaps — that you see, that we all see clinically, structurally, culturally — Dr. Knight, what gaps have you seen, because I know you've been in this space for quite a while also, that made you realize a dedicated center was really necessary?

[09:54] Dacre Knight: Well, I think anyone in this field knows that the biggest gap is really access to care. And there are various reasons for that. We talk about healthcare models and systems, reimbursements, primary care, medical education — for whatever reasons, access to care is the biggest gap. Now, I'm pleased to see that there are not only the program here at UVA, but other programs that are growing and budding across the country to improve on that. But we still have a long way to go.

[10:30] Dr. Linda Bluestein: Yeah, absolutely. So what does the structure of the UVA EDS Center look like, Dr. Knight, and how would you describe it as different from having an EDS clinic? I take it the structure is very intentional. Can you describe that a little more?

[10:50] Dacre Knight: Sure, glad to. The structure is still built with the intention of keeping the patient front and center. Their outcomes and their treatment success are the number one priority. And there are lots of things that go with that, of course, which we've had to design this center to serve.
One of them, which we just mentioned, is this integrative multidisciplinary approach. We have to connect with our partners in other specialties and align our treatment goals to meet the needs of the patient. Added to that, we want to advance the science. We want to do better each and every year as we learn more about these conditions. So we've developed a robust research program in conjunction with this clinical care model. We'll be taking in information from patients in the form of questionnaires. We hope to be designing clinical trials in the future as well — testing various treatment options and finding success with those that we may develop further down the road.

[12:00] Dr. Linda Bluestein: And Dr. Stephens, as interim medical director, what were your priorities during what must have been a challenging transitional period?

[12:09] Dr. Ina Stephens: Oh, that's a great question. My number one priority was having Dr. Knight join our program as medical director. When I met Dacre, I was really impressed with what he had done down at the Mayo Clinic. This was the model that I had kind of wanted. There were things I had wanted to build on, and I just felt that I really needed an adult counterpart.
[12:39] Before Dr. Knight got to UVA, I was working by myself — solo, a solo pediatrician taking care of people up into their 60s. That's a little bit out of my wheelhouse, if you can imagine. But I felt it was really, really important to at least hear their complaints. So many of these patients, as you know, have come in from years of fragmented care, and they've either just been given a diagnosis or they're still asking: what is still wrong with me? Being able to at least acknowledge that, no matter what age — I think I was able to offer that and I still am able to offer that to a lot of adults. But adults become more complicated as they get older and they have different needs, and I'm a pediatrician. So my number one goal was to get the most excellent internal medicine-trained physician. Having Dacre join us has been huge.
[13:30] The other major piece that I've been wanting to do is really engage the university — working with the other departments and letting them know about this new center. How can they help? Who can we identify in each department who is going to be our counterpoint in adult cardiology or pediatric gastroenterology? How can we work so that we have a real collaborative group of faculty who understand these patients?
[14:14] And then really working on building the infrastructure — having the physical therapists, the nurse coordinators, the care coordinators, the occupational therapist, the pain psychologist — all of that was really paramount. Those have been the things formulating over basically the past two years. We have really kind of officially opened our doors December 1st.

[14:41] Dr. Linda Bluestein: That's amazing. That's so exciting. And that is what patients need. We know they need multiple different specialists, coordination of care, and that kind of support from a nurse manager or care manager type person. So that's really exciting. Do you already have those people identified in the different departments, or at least a fair number of them?

[15:05] Dr. Ina Stephens: I would say we have a fair number of them, and this is going to take a while to build. But we are really developing the infrastructure nicely. The immediate care team — we have that built. We have the staff members, the faculty, and we're going to continue to work to put the pieces together, to really find where the gaps are and see how we can fill them as soon as feasible.

[15:29] Dr. Linda Bluestein: And Dr. Knight, when did you join the team, and how have things evolved since you joined UVA?

[15:38] Dacre Knight: Yeah, I was just going to add to what Dr. Stephens was saying. We were lucky enough to get started December 1st, but I actually came on in August and have been working full-time ever since I set foot on the ground doing all of these things we're describing — building, meeting, connecting, laying out the framework of how we're going to get all of our partners together in one place on the same track.

[16:06] Dr. Linda Bluestein: I'm sure it all takes so much more time than you think it's going to take. It's like anything that's really important in life — you think it's going to take a certain amount of time, but to do something really, really well takes a long time, right?

[16:18] Dr. Ina Stephens: I'm just going to say I never realized how long it takes Epic to make a template.

[16:22] Dr. Linda Bluestein: Yeah, I'm sure working with Epic on all of this has got to be very interesting. Especially since integrative medicine integrates everything. I sometimes joke that I'm so jealous of my husband — well, he's retired now, but he's a urologist, so he could look through Epic and look for urology-specific things. For EDS, everything is relevant. So for us it's so much harder. I'd be fascinated to see how you devised that in Epic, because so many things can be pertinent. Can you share anything more about that?

[17:05] Dr. Ina Stephens: I'm very grateful for Epic because I'm able to go through things very systematically. And I'm very grateful for my nurse care coordinators — they have tremendous help just kind of putting pieces together. I kind of know what to look for when I see the patient's complaint. If I see it's abdominal pain or bloating, I'll just go right to all their GI notes. It's right there for me. It's a little daunting, but I have a system now.

[17:38] Dr. Linda Bluestein: That's great. So, can you tell us a little bit more about what integrative medicine is and why this is such a good approach for people with hypermobile EDS and HSD — and probably other subtypes of EDS as well?

[17:55] Dr. Ina Stephens: Sure. Integrative medicine is really the approach to use for anyone with a chronic illness, with any kind of medical complexity. And the definition of medical complexity means two or more body systems involved — maybe heart disease and renal disease, or gastrointestinal complaints and neurologic disease. Being able to put that together and find potentially a single reason why — EDS naturally can give patients an explanation. Well, your GI tract is doing that because your autonomic system is also doing that. And it gives them a sense of empowerment. Patients finally feel like somebody is listening to me. This all makes sense. I am not making this up. This has not been in my head. I am not crazy for having these complaints. There's an underlying reason and we can work to start healing the body.
[19:09] What I really emphasize is that we're going to treat the issues that we can. I have my non-pharmacologic regimen and my pharmacologic regimen, and we're going to try whatever works for you — for almost every single system. And then we're going to help heal your body by decreasing inflammation. Inflammation is a tremendously important aspect of anyone with chronic illness and it exacerbates everything. So quieting down inflammation through dietary guidelines, through sleep hygiene, through exercise — I will potentially use supplements or herbal medication, deep diaphragmatic breathing, balancing vagal nerve stimulation. Vagal nerve stimulation cannot be talked about enough. I can give a whole other lecture about that, but I teach it to my patients in the clinic. I start out almost every visit — even an initial visit — by ending it with teaching them primary deep diaphragmatic breathing. Just: here, do this at home, practice this, quiet down, and then we can start really working on the other aspects of healing.
[20:21] So it's really bringing in a lot of lifestyle — I hate to use the words "lifestyle management" or "lifestyle medicine," but very much so. And then there are other modalities that can be used in a very individualized way depending on the patient — acupuncture for pain management, biofeedback, some CBT-like therapies, aromatherapy. There are multiple different complementary measures that can be used depending on patient need. I feel that it really works because the patients often come to me with multiple comorbidities and say, I don't know who's even taking care of me. They have such fragmented care. Being able to give them this — what I call, and what Dacre and I have discussed, an EDS home — we are addressing this issue of fragmented care and healing them from the ground up.

[21:25] Dr. Linda Bluestein: Yeah, I think that's so important. People say to me all the time, can you be my EDS quarterback? Because they really want that home, that person who is willing to look at a lot of different aspects of their life and their symptoms. So I think that's such an important approach that you personally have taken with your patients, and now expanding it further into this actual EDS center at UVA. And it's so exciting because I also feel like this is going to help so much with earlier recognition.
[22:05] Dr. Knight, I would love to hear from you about what you have experienced — first, how many years have you been taking care of EDS patients? I think I know the answer, but over that period of time, what have you seen in terms of delayed recognition and what happens? And what do you hope will happen at UVA, not only with earlier recognition, but also with this concept of the EDS home and a patient actually finally being able to have that?

[22:32] Dacre Knight: Yeah, that's a great question because we're talking about other gaps, and this is certainly another one of them. We started the Mayo Clinic EDS clinic in the fall of 2019 and have been doing it since. Fortunately, we had a gap there — we didn't have pediatric care at that clinic. We would very often get patients who had children, and then the next natural question was, I think I see some signs in my child — what do I do? We did have some partnered geneticists in the area, some pediatricians who are knowledgeable in the state of Florida, but those were long waitlists themselves and not really accessible.
[23:17] So it's definitely a huge advantage to be able to partner with Dr. Stephens as a pediatrician and to link all of these things together, because yes, to your point, early recognition is critical. The message initially to parents was that if you do recognize signs and symptoms in your child, then they should have their own evaluation. You can certainly educate them and share things you're learning about how to prevent injuries and so forth, but everyone is unique and they may have things that would not be recognizable by a parent alone. So we do recommend everyone who may be affected to have their own clinical evaluation.
We talk about how early diagnosis is critical for a number of reasons — not to mention just serving them with an understanding of where their symptoms may come from. So many patients describe a childhood and a lifetime of being told that everything's okay, or just being gaslit into the understanding that these are just growing pains or nothing's wrong. And we want to at least serve them with some understanding and some knowledge that empowers them — with further knowledge they may gain through different networks of community, of doctors or patients who can guide them along the way.
[24:41] What we want to do is get patients in as soon as we can. And then in the future, when we have a better understanding of the natural history of disease — what may be some manifestations of symptoms at certain milestones from birth into old age — then we may have better screening tools to put in place at different age groups. We're not there yet. We're still gathering as much information as we can on the natural history of EDS, but we're still in the early stages of that.

[25:16] Dr. Linda Bluestein: And with having the center and multiple physicians involved, nurse practitioners, PAs, etc. — is it true that any age person could come for care?

[25:31] Dacre Knight: Yes, that's the idea, and it really does span the whole range of ages. For various theoretical reasons, we still see that the highest number of patients tend to be in their 20s and 30s. We think this may relate to some of that natural history I'm mentioning — where there maybe is some injury that has been going on through teenage years, through activities like dance or sports, that kind of reaches a tipping point when they enter their 30s. But there are definitely some things we can do to recognize it early on. And there are some patients who just happen to come upon EDS — whether through a physical therapist or a friend who mentioned it — and then they start connecting the pieces. They may be later in life, and it still serves them well to know what they can do to help with any of the conditions and symptoms they may be suffering from.

[26:33] Dr. Linda Bluestein: And Dr. Stephens, I would love to hear from you because you are a pediatrician. We do think of these conditions being diagnosed often later in life. I know that there are different criteria that have been introduced — I believe the pediatric hypermobile EDS criteria were introduced in 2023. We have the 2017 hypermobile EDS criteria introduced by the EDS Society. I know other countries have different sets of criteria as well. What do you think the value is of diagnosing these conditions in pediatric patients?

[27:05] Dr. Ina Stephens: That's a great question, and I get asked that a lot. Like, why am I seeing this 5-year-old? Why am I seeing a 12-year-old who hasn't quite hit puberty yet? First thing I have to say — and I have to say this to a lot of physicians — EDS doesn't start when you reach adolescence. This is something we've been born with. And there can be signs from the very earliest first year: developmental delay, hypotonia, delayed walking, delayed teeth, feeding issues — they're not swallowing properly — chronic constipation. How many 5-year-olds do I see that end up having encopresis as an 8-year-old? Encopresis — for those of you who don't know — means withholding stool. They could go weeks without a bowel movement. And this is not only physically traumatic for these children, but very emotionally and mentally traumatic, if you can imagine being one of those children and having all the comorbidities that come along with that.
[28:19] I see these patients who come to me having already been seen by multiple different subspecialists. At the age of 8 or 9, they're being told they have so many problems and it's all in their head. They already have some mental health issues with anxiety. Up to 80% of children with EDS, even through adolescence, can be diagnosed with some sort of anxiety, just due to the fact that they have so many medical issues. So I think diagnosing them early and identifying problems early is tremendously helpful.
[28:53] Musculoskeletally, it's huge. I see children walking into my clinic whose legs are collapsing inward due to significant pes planus, ankle pronation, then their knees are going, and their hips are clicking out and causing problems. And it's all connected. If we could have gotten them into a good pair of arch supports and AFOs with prosthetics and orthotics at the age of 4 or 5, it could have prevented some of these issues. If we could have gotten them into some mind-body exercise — giving them some control of their body, like ballet — and I'm speaking to the choir here, Linda, you know that. I was a ballet dancer before medical school, and I think it actually saved me. It gave me body awareness. It allowed me to start utilizing my muscles and not leaning into my joints at the age of 13, 14, 15. I was using my core musculature.
[29:57] So getting them into some kind of mind-body exercise, whether it's dance or Pilates or a martial art, and having them notify their instructors — I am hypermobile, don't overstretch me, help me out appropriately — I think it just makes for a healthy body further down the road. That's why I think it's important to diagnose children.

[30:24] Dr. Linda Bluestein: Oh, that's so compelling. I see so many people who have been gaslit, and when that happens, it is the exact opposite of being supported and validated and being given what are often relatively small interventions — things that can be quite safe even in children. It's heartbreaking when you hear things like, why bother with the diagnosis because there's nothing you can do? You just gave us a litany of things that can be done.

[30:59] Dr. Ina Stephens: Yeah. I want to add one more thing to that, if that's okay. There has been quoted data — and I can get you this research — but the bottom line is that up to 86% of children who have been diagnosed with EDS at some point in their life have had severe problems as a child with school performance and school disruption, either dropping out of school or having academic issues because they can't make it through school. What does that do to a child who says, I'm performing poorly? That just sets them up to think, well, I'm not going to make it academically. That can be very damaging to a child. And up to 86% of children report some kind of mental health issue, such as the school issues I just mentioned. To prevent that is tremendous.

[31:59] Dr. Linda Bluestein: Huge, huge. And if you can help a child, then you can maybe give them 80 years of quality life. Not that we don't all want to work with older people as well, but it just makes such a big difference if you can intervene at that early age. We're going to take a quick break, and when we come back, we're going to talk more about the new EDS Center at UVA, which is so exciting. And I'm sure everyone by now is thinking, wait — how do I sign up? How do I get in? We're going to talk about that as well. And we also have an exciting announcement. So we'll take a quick break and be right back.

[34:37] Dr. Linda Bluestein: Okay, we are back with Dr. Stephens and Dr. Knight, talking about the exciting new center at UVA. And I would love to hear from you, Dr. Knight, about what a patient can expect now if they call — or if their doctor's office calls — and says, I want to get a patient in. What does this actually look like right now?

[34:59] Dacre Knight: Well, to be perfectly honest, they can expect a bit of a wait because there has been so much demand. I hate to say it, but I mean, I guess it's a good problem to have — that's why we're here. And we're growing as quickly as we can. Trust me, we're hiring, we're interviewing. I have more interviews tomorrow, so we're doing as much as we can, as best we can. Step number one is to get on the waitlist, and we'll work our way through it. We've already been rolling along quite efficiently here, so it hopefully shouldn't be too long.
[35:49] Now, the next questions patients often ask are about records and medical records, because many of our patients are coming from outside of the university health system — which is good, we want to reach as far and wide as we can. We accept records electronically. We accept records if patients bring them with them — that's fine, we can scan them in and get them on their chart. But I also don't want to take away from that initial visit, which is so important to just sit down and talk and be heard — not to have all the anxiety around records and whether they've come through or not. Rest assured, we'll get them all as we need and will do any additional testing if not yet completed. That would be the expectation at this point.

[36:42] Dr. Linda Bluestein: So if a patient has an interest, they should get on the waitlist sooner rather than later. They're not committed to anything, right? They don't have to pay to get on the waitlist or anything like that. If they think they might want to be seen, they should get on the waitlist.

[36:56] Dacre Knight: That's right. And we do accept self-referrals. I don't know if you have show notes where we can list our addresses and phone numbers.

[37:03] Dr. Linda Bluestein: Definitely. Yes, absolutely.

[37:04] Dacre Knight: So we can have all that shared.

[37:06] Dr. Linda Bluestein: Yes, we will definitely include all of that in the show notes so people know exactly what they should do. And like you said, records — they can worry about that part later. What about different states and different countries? Who can be seen?

[37:21] Dacre Knight: Yeah, this is a good question. And I'm going to add one more thing too, in case you didn't ask, which is: patients who are already seeing primary care doctors, keep working with your medical team as you're doing. If you're on the waitlist, there's no need to pause anything. Keep your routine follow-ups with your local doctors. We'll pick up where we need to.
[37:46] And yes, we do see patients in person for the initial visit. So every patient would be seen in person, wherever they're coming from — that's fine. Now, some of the legislation and policies around video visits and telemedicine limit us as far as follow-up visits go. We'd like to do as much as we can by telemedicine just for accessibility, for us and for patients. But the current state of the situation is that you have to be in the state of Virginia for a video visit, which — the irony is not lost on us, right? The patients who need that the most are the ones coming the furthest away. But these are just the politics that go behind healthcare that I can't fix too quickly.

[38:33] Dr. Linda Bluestein: Yeah, trust me, I totally get that. It is ironic, you're exactly right. So somebody though — I just want to make sure it's abundantly clear — they're coming to UVA in person for the first appointment, but they could be from any state in the US and from any country. Is that correct?

[38:53] Dacre Knight: Yes. The only thing about other countries would be about reimbursement, about coverage — whether they're going to get insurance coverage. It just depends on whatever their provider is, or whether they have to pay out of pocket, and that varies per individual.

[39:12] Dr. Linda Bluestein: Okay. So let's say somebody has gotten off the waitlist and they've gotten the news that they have an appointment. What can they expect at that actual appointment?

[39:22] Dacre Knight: Yeah, great question. We do have a website and we can share that as well, where we give an outline of the goals and mission of the program. And I touched on it too — that we want to serve as an EDS home. This means that we want to address the full range of things that can be related to EDS as far as healthcare concerns and issues go.
[40:03] We do recommend patients keep a primary care doctor just for other health needs — cancer screening, immunizations, things like that. But anything related to EDS — symptoms of EDS, POTS, mast cell activation, and so forth, all these things that we see run together so much — that's what we're here to serve. So that initial visit, some of those questions come up: what exactly is the role, what does follow-up look like, and things like that. Those are very important questions.
[40:38] We do want to allow as much follow-up as needed, really. Some more, some less for some patients. Some newly diagnosed patients who are just coming on with a whole plethora of symptoms may need a little bit more guidance and care. Others who have maybe just been told they might have EDS and whose symptoms don't really bother them may not need so much follow-up. We've seen the whole range. So that's something we want to make sure we outline at that first visit.

[41:10] Dr. Ina Stephens: Also, at that first appointment, what we plan on doing — once we fully get ourselves established in our facility — is to have the patient evaluated by a physical therapist. We're going to have surveys done to see if there are any psychological needs, specifically around dealing with chronic pain and having a chronic illness. So psychological services will be available. And then getting involved with potentially some research and the ongoing clinical trials that Dacre has mentioned that we've already put into the pipeline. So that first visit eventually is probably going to take a whole afternoon or a whole morning, because you're going to be seeing multiple providers.

[41:59] Dr. Linda Bluestein: That's really what I was trying to figure out. I understand it's going to look very different in five years compared to how it looks now. In the future, maybe somebody's going to come in and actually see multiple different departments while they're there. Is that kind of the idea?

[42:19] Dacre Knight: Yeah, and that's part of what we're building toward right now as we speak. Our physical therapy team, occupational therapy, nutritionists, pain psychologists — all of those are being put in place to be embedded in our center and in the same physical location, in conjunction with initial visits. So I'm glad you asked that.
[42:45] And to that point, yes, there are lots of symptoms and conditions we'd want to get as much information on as possible. We can get some of those from medical records, but there will be some questionnaires to fill out. I apologize in advance that some of them can be lengthy, but the list of symptoms and conditions can be quite lengthy and complex too, so we want to make sure we capture it all. In our experience, we've actually had patients say they're very happy to fill out these questionnaires. This is the first time someone has really given them the time to ask the right questions — sometimes they even learn things from the questionnaire that they didn't realize might be connected. So I think it helps both of us.

[43:35] Dr. Linda Bluestein: Yeah, I've had that experience as well. Sometimes people will say it was exhausting — and with brain fog and different symptoms it can be very challenging — but at the same time, they're so grateful somebody finally asked them these questions. Sometimes the light bulb goes off that a particular symptom they're having might not be normal, because they see it asked on a questionnaire. So, Dr. Stephens, how do you see this work creating a ripple effect beyond UVA?

[44:08] Dr. Ina Stephens: Oh, that's probably the multimillion-dollar question. And I think the answer is that we really have to teach the American medical community — the national and international medical community — what EDS is, what HSD is, how you diagnose it, and how you can manage it optimally.
[44:32] I think the number one thing to do in the United States is to get what we call the content specifications — what you need to learn in your medical specialty — to include EDS criteria in every relevant specialty. For example, if you are an ophthalmologist, you should be able to recognize that if your patient comes in as a child with severe myopia and maybe some lacunar retinopathy, ding, ding, ding — maybe do a Beighton score on that patient while they're sitting in your ophthalmology chair. Every physician needs to know how to do a Beighton score. Maybe not a pathologist, but basically every other physician needs to know. Every pediatrician needs to do it on a well-child exam. And if you're a gastroenterologist seeing a child with cyclic vomiting and chronic constipation, ding, ding, ding — do the Beighton score. That should be in the content specifications.
[45:35] I can't begin to tell you how many times these children come to me with those as the baseline issue. Again, they came into integrative medicine because they have cyclic vomiting and migraines and it's all in their head. Please go see the integrative medicine doctor and maybe do some deep breathing. And I'm like, well, maybe — but are you also developing a bunch of hives and rashes, and do you get dizzy, and your Beighton score is an 8 out of 9? Well, that's interesting.
[46:03] So every physician should really be alerted to this. Having this put into the content specifications through the LCME and the ACGME is going to be paramount. That's absolutely number one. It empowers pediatricians, it empowers internal medicine doctors, it empowers physicians to be able to give the patient some kind of answer. We have to get the education into the medical schools, the training programs, and the fellowship programs. That's how to spread this information.

[46:44] Dr. Linda Bluestein: Yeah, totally agree. And what about clinician education? How important is that to the mission of the UVA EDS Center?

[46:53] Dr. Ina Stephens: I also want Dr. Knight to expound on this further, but we are putting together a clinical and research symposium that we're going to make annual. Our first symposium was one of the first things we talked about when Dacre joined back in August. I said, I want to have an annual meeting. I want to get experts from nationally and internationally to discuss the latest in research and clinical care, and have it teach the physicians here at UVA and beyond. Our first symposium is this April, April 9th and 10th. I'm really, really excited about it.

[47:31] Dr. Linda Bluestein: That's amazing. That's fantastic. Dr. Knight, do you want to add anything to that?

[47:40] Dacre Knight: Well, Linda, I think your question is excellent. What do we want to see happen from building this program? I, for one — and I know you want to see our program succeed, right — and not only for the purposes it serves UVA and for our patients, but for that reason, to provide motivation and assurance to anyone else who is considering this. I know there are lots of institutions who are considering it. I've had lots of people reach out to me who have asked, you've done this, how do you do it, how can we get started?
[48:18] I feel a little bit like we're flying to the moon, right? And if we land on the moon and can say we achieved it, then that gives reason for others to believe it's possible too. And that's what we really want. The burden is on us to see it through, to see it succeed. There's great weight and responsibility, but I think the benefit from that would be that other institutions can be assured that it is a good enterprise to embark on. It's good for everyone — good for the institution, good for the patients, good for providers. We have a place for patients to go now, whereas in the past, providers were kind of playing hot potato and patients would feel that.
[49:06] For all those reasons, it's really critical that we do succeed. And I'm confident we will. We've got all the right astronauts on this rocket ship to get us to the moon. We're well on our way.

[49:20] Dr. Linda Bluestein: I would go so far as to say that it is critical for society, given the number of people who seem to be impacted by these conditions. I don't know how much of it is COVID, how much is selection bias — because the audience I serve, you hear from all these people. You talk to someone and you're like, oh, you don't have chronic pain? Wow, that's so refreshing. But I feel like it's critical for society because if we don't do things like this, we're going to have this massive generation of young people who potentially grow up with chronic pain, not able to have fulfilling careers or contribute to society. It's my understanding we already have a workforce shortage, but if we don't address these problems and really help people regain function and improve their quality of life, I think we could really be in a huge state of hurt as a society.

[50:19] Dacre Knight: Yeah, 100%. And it's crazy to think, looking back, what have we missed over the decades prior? We know we've gone through opioid epidemics and things like that. Yeah, we have all the reasons why we want to get it right.

[50:35] Dr. Ina Stephens: Yeah.

[50:36] Dr. Linda Bluestein: Okay. Well, we are also formally announcing something really exciting: a new collaboration between Bendy Bodies and the University of Virginia Ehlers-Danlos Syndrome Center. I am so excited about this and have been wanting to make this announcement for such a long time. Having both of you here for this announcement is just really, really thrilling. Either one of you can start, but I would love to hear what this partnership means to you and if we can explain to people what the partnership actually involves.

[51:11] Dacre Knight: Well, I can say I'm very deeply honored, because I know this is such an excellent program. It's had such an impact on this community. And if there's anything we can do to serve it from the bottom up as well — with the clinical care and research and all of those things — then I can imagine the sky's the limit.

[51:33] Dr. Ina Stephens: Yeah. I just want to say I am also so thrilled and so honored by this. Linda, I have been listening to your podcast since the get-go. I've listened to every episode. I have referred it to just about every single one of my patients, and they come back to me with questions — I heard this on your podcast — and it just makes the conversation easier and smoother. They know what they're dealing with. I know what they're thinking. I am just deeply grateful. Really, really grateful. So grateful that you're having us on the show today and grateful to be part of it. Thank you.

[52:13] Dr. Linda Bluestein: Yes, me too. I'm so excited. I'm excited about all the research that you're going to be doing, all the people you're going to be serving. And then together, how we're going to be able to combine our different strengths — because we are doing enough different things that we're going to be able to help so many people.
[52:34] One thing I realized a long time ago, before I started the podcast, was that there were so many things discussed in one-on-one visits that could be one-to-many. I tell people very frequently to go listen to a particular episode rather than spending that time in the visit discussing something they could go learn on their own. Then they can spend more of the time with their clinician on things that are very specific to them. It can be more efficient. So I'm so excited about this partnership. I think we're going to be able to help so many people, which all three of us share that incredible passion to do.
[53:16] So what did I not ask you that you wanted to talk about? What do you think makes this the right moment in the evolution of EDS care to be doing things like this?

[53:28] Dacre Knight: Well, looking back, we talk about access issues and also a growing interest in this field. There are institutions and programs that are starting across the country. And we look through some of the scientific criteria that have changed over the years — from the '90s to the early 2000s to 2017, and now being revised and looked at more closely again. I see that it comes in these little waves where the criteria is being looked at and distributed. But what we know is that whatever is being published and studied, these patients are still there living day-to-day lives and still being affected.
[54:20] We want to be a steady force. We get a lot of excitement and buildup and the waitlist grows, but we want to have not only access to care, but the steady flow of information and progress that's being developed in these care models and in the understanding of the disease altogether. So I think that's important — and your voice has been so critical to reach so many who otherwise may not have access. I've said the exact same thing too: maybe you can't get in to see this specialist, but check out this podcast or this resource that has the material specifically pertaining to you. That is huge.

[55:01] Dr. Ina Stephens: Yeah, I absolutely agree. And the other thing — why are we doing this now and why is it important now? Over the past 15 years, there has just been so much more understanding and an explosion of research. People have been identified with it. Linda, we went to medical school way back. I did.

[55:24] Dr. Linda Bluestein: I did too.

[55:25] Dr. Ina Stephens: A hundred years ago. And all we knew about Ehlers-Danlos was that one picture of the guy holding onto his face out here. That was the one picture, one sentence. And nobody really cared about this forgotten zebra disease. I think we all know that it's not a zebra. It is far more common than that. Some aspects of it are far more common. These people need help. We need help. The community needs help. The medical community needs to understand and get on board. There has been tremendous momentum over the past 15 years. Developing the center at this time — we're at the height of the momentum. I'm psyched.

[55:26] Dr. Linda Bluestein: Yes. And there are still too many people who don't even know this is a thing. I ran into somebody — well, not ran into, I was in a hot tub with somebody — and they ended up ultimately becoming my patient. And they literally said, I had no idea this was a thing. And they had had so many injuries as a gymnast. We just need to reach more and more people so that they know to stop blaming themselves and that there are things that they can do, especially using an integrative approach like what we've been talking about.
[56:48] Dr. Knight, when you look ahead, what do you hope this partnership between Bendy Bodies and UVA will make possible for patients who are still really desperately searching for answers?

[57:03] Dacre Knight: Well, maybe I should spend more time in hot tubs to try to reach out to these patients, because I know they're out there.

[57:08] Dr. Linda Bluestein: They're out there.

[57:10] Dacre Knight: You illustrate it well. You never know where you'll come across patients. And that's what we say about EDS in our community of physicians and scientists — you do not usually find EDS. EDS finds you. Whether it's something you've been impacted by symptoms-wise, or you're just talking to someone in a hot tub, it finds you. And it kind of opens up this world of opportunity for understanding. If you're a researcher, opportunity to investigate. If you're a clinician, opportunity to improve the lives of patients you're treating. We need to seize that and take advantage of those opportunities.

[57:55] Dr. Linda Bluestein: And I think what you said about clinicians really makes a lot of sense too, because I think sometimes some clinicians hear "EDS" and — I don't know about the two of you, but I've heard fibromyalgia referred to as the F-word and EDS referred to as the E-word. There's that stigma that we really need to work on. We really need clinicians to understand that if they learn about these conditions, they can actually help more people, which hopefully is why they're taking care of patients in the first place. So I feel like we really need to work on that aspect — the stigma — and make the case: here's something you can learn about that will give you tools to help more people and be more effective in your clinical care.

[58:47] Dacre Knight: Yeah, absolutely. I think about it too in the sense of what Ina was referring to earlier, when we need to improve the American medical education system altogether. But in the interim, as best as we can on our own — maybe we can show that there is real improvement in our patients. That's going to help not only patients themselves, but say: here it works and you can do this too. It's possible. It's within your grasp. We want to serve as an example to others.

[59:22] Dr. Linda Bluestein: Exactly. And Dr. Stephens, for those who are feeling hopeful for the first time in a long while, what else would you like them to know? Maybe in reference to what Dr. Knight was just saying, because I know that you with this integrative approach have really had some great successes. I want people to feel really hopeful right now. You are so skilled at what you do and you've done so many amazing things getting this center off the ground. What else do you want people to know?

[59:52] Dr. Ina Stephens: First of all, thank you. I so appreciate those words. It means a lot. And I think the most important thing I want patients to know is that you're finally going to be heard. And if you're not, please don't take no for an answer. Please go find somebody who is going to listen to you. I say this to every single patient: pain sucks. It does. I've been in chronic pain. I know what it's like. My children have been in chronic pain. And nobody can see your pain. Nobody sees it, nobody feels it. And it's kind of unfair for somebody to look at you, do an exam, and say, well, you look great, please leave my office.
[1:00:38] So what I want to say is that having a center like this, having a platform like Bendy Bodies — it is just going to be further empowering to all those out there who are struggling. Keep moving on, go onward. Help is on the way and the help is going to be out there. That's what I have to say.

[1:01:06] Dr. Linda Bluestein: Love it. Love it. Don't give up. And yeah, I love what you just said about no one else being able to see your pain, because I've gaslit myself for that exact reason — the clinician I was seeing didn't understand the pain I was experiencing and didn't think the imaging findings would match up or whatever. And then we start to doubt ourselves. So I love that you say that to all of your patients, because it really is important. So I love to end every episode with a hypermobility hack. Do either of you — or both of you — have a hack to share? Dr. Stephens, we could go with you first.

[1:01:48] Dr. Ina Stephens: Sure. I think the biggest hack I have is that we need to have an EDS home in just about every community. So I'm speaking to the medical community out there: this is your hack. Start thinking about how you can build an EDS facility if you're in an area that doesn't have one, or start learning about it and start thinking about how you really work to heal the patient. An EDS home is really important. And this is different — as Dacre mentioned — this is different from a PCP. We are not necessarily there for, unfortunately, the 103 fever and the pneumonia. We need a PCP for that. But to have an EDS home where you can feel that your care is being listened to and put together, where the subspecialties you need to see are going to be accessed appropriately — we need to have that throughout the United States and we need a network of it.
[1:02:53] I kind of look at this almost like there's an image I'm thinking of in Hindu philosophy where it's like this diamond where every piece of the network reaches another piece of the network and we're all so integrated. If one little piece falls out, the whole thing falls apart. We all have to be together in this and we have to build it. That's the message. That is the biggest hack for the community.

[1:03:22] Dr. Linda Bluestein: That's a huge hack. Dr. Knight?

[1:03:24] Dacre Knight: Well, I'll give Ina one more of her own, actually, because I know she's so savvy in these areas — and it is diaphragmatic breathing. I've seen her do it, I've seen her counsel patients on it, I've shadowed her and she does an excellent job. I agree with her that it does have rebounding benefits. I'm still learning from her about all the tips and tricks of counseling on that.
[1:03:45] But mine is — to echo a little bit of what you were saying, Linda — listen to your gut. I came across an old quotation some time ago that I thought was really poignant here: listen to your gut. If you can't hear what your gut is saying, you're thinking too loudly. And that may be the time that you are gaslighting yourself, if you're overthinking or justifying. But if you know something's wrong, something's wrong. I can't tell you how impressed I am by the patients who come in having pushed against all the forces against them. They carried that weight, but they knew deep down that something just wasn't right, no matter what they were told. And sure enough, it wasn't. And it's so good of them to be here so we can start working on it. I've got so much to say about those patients. It's really amazing.

[1:04:52] Dr. Linda Bluestein: I think trusting ourselves is so important — and I love that framing of you're thinking too loud, because I am definitely guilty of that. It's really an important thing for us to tap back into our intuition and listen to our gut. That's really great. Okay, where can people learn more about the UVA Center? Either of you can answer that one.

[1:05:18] Dr. Ina Stephens: We do have an email address to get onto the waitlist, and we can send those to you and put them into the show notes. I can also add my own email address. We also have a FAQ — an Ehlers-Danlos Syndrome fact sheet — at UVA. We also have one for pediatric integrative medicine and how complex patients fit into that model of care. We can get you all that information in the show notes.

[1:05:49] Dr. Linda Bluestein: Great. We will have all of that information for everyone. And Dr. Stephens, do you have any final parting thoughts? Anything you wish I had asked you that I didn't, or any parting words you want people to know?

[1:06:05] Dr. Ina Stephens: Don't take no for an answer. Exactly what Dr. Knight said. These patients know that something isn't right, and you need to keep going. Go onward, find an answer. That's what I needed to do. That's what I did for my family. And that's what I do for my patients. Onward. Don't take no — not a good answer.

[1:06:33] Dr. Linda Bluestein: Okay, Dr. Knight.

[1:06:34] Dacre Knight: Yeah, I think it's great that we've had this time together and been able to share the exciting news. We've been able to talk through the background and design of our center because we really do want to achieve everything we can and more. I really think that in the end, if we do meet those goals, then we can provide a template for others around the country who may be interested in doing the same thing and achieving the same success.

[1:07:04] Dr. Ina Stephens: And let the healing begin.

[1:07:09] Dr. Linda Bluestein: Yes. Let the healing begin. I love that. Totally agree. And I want to say, having known both of you for several years now — I'm so excited because the UVA partnership between the two of you and the collaboration between the three of us is just so exciting. You complement each other so incredibly well. I really feel like this center is going to be so fantastic and really move the needle for patient care, which is so desperately needed. I'm so excited that we finally got to have this conversation and let everybody know the exciting news. I'm so grateful to both of you for taking the time to chat with me today.

[1:08:03] Dacre Knight: Likewise. We have it recorded for history's sake too, right?

[1:08:07] Dr. Linda Bluestein: Yeah.

[1:08:08] Dr. Ina Stephens: Thank you. Thank you.

[1:09:06] Dr. Linda Bluestein: Well, I am so excited that we finally got to share this big announcement about the collaboration between the UVA EDS Center and Bendy Bodies, as well as tell you about this exciting new center that's going to be helping so many patients. I just love Dr. Stephens and Dr. Knight so much. I really think this is going to be such a great center and such a great collaboration, and I really am excited.
[1:09:32] Thank you so much for listening to this week's episode of Bendy Bodies with the Hypermobility MD. I have so many other resources, so please check out my newsletter, The Bendy Bulletin. You can check that out on Substack at hypermobilitymd.substack.com. You can help us spread the word about connective tissue disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex, multifaceted conditions.
[1:09:56] Did you know that I also offer one-on-one support for both clients and healthcare professionals? Whether you're living with a connective tissue disorder or caring for someone who has one, I've got your back. Check out my coaching and mentorship options on the services page at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn at Hypermobility MD. You can find Human Content, my amazing producing team, at Human Content Pods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast.
[1:10:27] 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 shared on Bendy Bodies should be considered medical advice. Please always consult a qualified healthcare provider for your own care.
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