The Roadmap That Could Change EDS Forever with Lara Bloom (Ep 176)

Transcripts are auto-generated and may contain errors Lara Bloom: [00:00:00] There is no such thing as EDS specialist. I've said this many times. All it requires is someone who's willing to listen and learn, potentially if they haven't come across the condition before, but it's multi-systemic. So you know, the ideal place for this to to start from is primary care. And I would just encourage with any disease, and I say this, there is not enough listening that happens in the clinical pathway. 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 connective tissue disorders like Ehlers-Danlos Syndrome dedicated to helping you navigate hypermobility and live your best life today. I'm excited to welcome back Lara Bloom. President and CEO of the Ehlers Danlos Society [00:01:00] and one of the most influential voices shaping the global future of EDS and HSD right now is an especially important moment because the society's Road to 2026 initiative is actively reexamining diagnostic criteria and treatment pathways. The 2025 Community Experience Survey has gathered real world patient data on a scale we've never seen before. The society has taken EDS and HSD to the World Health Assembly bringing these conditions into the global public stage. The Global Registry and Biobank are expanding rapidly fueling major research efforts into genetics, comorbidities, and long-term outcomes. Lara brings the rare combination of lived experience, global advocacy, and organizational leadership, giving her a uniquely powerful perspective on EDS and where care is heading. In today's conversation, we'll explore what's changing, what's coming next, and what all of this means for diagnosis, research, equity, and patient care. This is a conversation you won't want to miss. [00:02:00] As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end, Sue. Don't miss any of our special hypermobility hacks. Here we go. Okay. I am so excited to be here again with Lara Bloom. And how are you doing today? I'm really good. And how are you? I'm good, I'm good. It's post Thanksgiving weekend here in the US so a lot of people had a little extra time off, which was nice. So yeah, and I'm so excited for this conversation. I've been wanting to talk to you for such a long time and I have so many great questions. I think they're great questions anyway, so, uh, just super excited to dig in. Um, there's been so much happening, I feel like, in the EDS space, so it's an exciting time to be doing this kind of work. And the recent research by Dr. Chip Norris and his lab has talked about, you know, could hypermobile EDS actually be a neuro immune condition? Um, he [00:03:00] says, you know, is it actually that the immune system is actively dysregulating or degrading connective tissue? Um, how does that. Research, and I know it's, you know, one study, so it's, we have to take it into context, of course. With all of these things, um, has that influenced how the society approaches research, education, clinical priorities? Um, and does that shift make you more hopeful than ever that we're gonna actually be nearing a major breakthrough? Lara Bloom: So it's actually not one study. It's more than one study at the recent scientific symposium in Toronto. Um, uh, another partner of ours, ICR, who used the same hedge samples as the Norris lab did, uh, also found the same outcomes on a, actually a much larger cohort, um, which really, um, a again, backs up this theory, uh, that we are looking down a, a different, uh, lens than we previously thought we were. And this immune dysregulation is incredibly exciting and we're plowing a [00:04:00] lot of money, um, and time, uh, into more research into these areas to try and validate what these first few studies have found and replicate it and try and find out more. So, yeah, I think this is a really exciting time. It's really promising. I, I think that in the next. You know, five minutes to five years, who knows how fast. I think we're gonna know a lot more. And it's because of studies like this and, and really it's because of hedge, you know, it all comes back to hedge what the, all of these studies have used, the hedge samples, everything that we have discovered or found or, or, or realized we haven't discovered. Because not knowing stuff is as helpful as knowing stuff has all come from, from those thousand samples. So that really paved the way to the, the direction of travel that we're in now for these conditions. And it's incredibly exciting. So I definitely remain very hopeful. Dr. Linda Bluestein: And there's people listening to this show who [00:05:00] are brand new to the EDS world and there's people who are very, very, um, experienced and have lots of knowledge. Can you just briefly explain what the hedge study is, just so that, or hedge samples are just so people have that framework. Lara Bloom: Absolutely. So in 2018 we received a, a large donation of, um, initially a million and then $2 million where someone matched it to whole genome sequence, a thousand people who met the 2017 diagnostic criteria for hypermobile EDS in the hopes of trying to find a marker. And we recently shared the first outcomes of the study, which showed that there was, which wasn't a surprise, there was no found, um, single gene causing the condition, which I think everybody was just looking for validation to confirm what people already knew. It didn't rule out that it was genetic. More work is needed. There's another phase happening now of hedge. But, uh, as well as the actual hedge study that was, um, with an analysis at the Broad, [00:06:00] um, and with Christina Es, um. There have also been other studies that have used the same samples. ICR and Norris Lab being just two examples. There are others, um, marina Columbia's work that, um, also yielded some outcomes in in Italy, um, and, and others. So I think it, a lot of people, I'm looking at these and trying to find answers and we've now, we've had our first enrollment event at, for our global biobank. So we're adding more and more samples now and not just, uh, blood, but we're looking at urine and skin and plasma and all sorts of things to really diversify, um, the research that can now be done with the knowledge that we now have, Dr. Linda Bluestein: which is really amazing. When we have a biomarker, it's going to make such a huge difference rather than relying on clinical criteria that are, you know, sometimes subject to interpretation and some subjectivity. So I think that's just so wonderful and, and in. Thinking about the immune system and mast cell directed therapies. [00:07:00] Um, you know, clinically I have found, and I know a lot of other people have found that mast cell activation can actually be the head of the EDS monster, not the tail. Um, I've really found with my patients, when I treat their mast cell activation, kind of regardless of where they are on that spectrum, it seems to really make a big difference also with their EDS symptoms. Um, is the society looking at that? Are they observing similar patterns? Um, what are your thoughts on MCAS and is it universally present to some degree in hypermobile EDS? Lara Bloom: I don't think we can say that yet. Um, but I think what we can say is that there are a cluster of comorbidities that we see time and time again, uh, to be very prevalent in this time. And that is the mast cell, uh, GI. Autonomic dysfunction and also bladder dysregulation. So we're seeing this pattern. We cannot say it's every person and we can't say it's universal, but we can say there is enough that they are being considered, [00:08:00] um, when rethinking what the diagnostic criteria will be. Because for those that aren't aware, up until this point, there has never been any comorbidities included in the diagnostic criteria. And so what we had a heads and HSD criteria study that's been running the past few years, multicenter global study, trying to. Find out first is the current criteria fit for purpose, and if it's not, what should it be? And so that work is gonna be part of the publication that's coming out at the end of next year, which is gonna give us a new diag diagnostic, uh, criteria and classification for all the types of EDS and hsd. Dr. Linda Bluestein: Perfect. 'cause that was my next question. You already, you already answered it. So we're gonna talk about the road to 2026 more, but, um, that's gonna be coming out the end of next year, so, great. Um, okay. That's, that's great to know. Um, I wanna talk about vaccination a little bit because this is a surprisingly polarizing topic I'm finding in EDS and MCAS support groups and there's so much misinformation [00:09:00] and, um, you know, given how much you travel and how much public exposure you have, I'm curious what your approach is to vaccination and from the organizational side, does the society offer any official guidance? Lara Bloom: So, you know, personally, I'm, I am. I'm definitely not anti-vax. I had my COVID vaccines. I have been vaccinated, I've vaccinated my daughter. Um, I believe in science and I, I think we're very, very lucky to have the vaccines that we do have. However, I think that the COVID-19 presented a lot of challenges with the speed and the rollout and the process of, of how they came to be. And as a consequence, there was a lot of distrust and, and unease around getting the vaccines. I certainly had some complications from my second and third vaccine. Um, I still had them, uh, because I believed that the benefit, um, outweighed the risk. But, um, currently EDS doesn't get you on what's called in the UK the [00:10:00] shielded list. So people aren't able to get a, an EDS vaccine at the moment and. I think especially with recent studies that have come out, that's something that we would like to look at and see if we can advocate for that being a consideration. But it's different country by country, state by state as to how these things work and how people can get access to them. But as an organization, you know, we, it's very difficult because you, we, we cannot impose what people should do. It's it's person by person. And whilst we encourage people to be vaccine because you know that it could help. There's other reasons why people may not be able to get vaccines or, or, or want to. And, and like you said, it's, it's a hot topic right now with varying different, um, opinions out there. So we don't have a stance as an organization I, and nor do I think we should. Um, but we certainly, when during the COVID protocol, times when there [00:11:00] was, you know, people had to get vaccine to come to events, we, we followed all the adherence from the WHO and, and that's really where we seek our guidance from. Um. Follow the WHO guidelines. So that's, that's really, uh, the organization stance on things. But it, it's difficult when putting on events, you know, a lot of people, um, are upset that we don't have compulsory masks at our events anymore. And the irony is, is that we did have, for many years, much longer than other organizations were. And I think the last conference we had was Dublin, where we had a mandate, a mask mandate. And I think that there were three people in the room wearing masks. Oh, really? Mask mandate. And so the point is, is you have to leave it to people's decision. We are not living in a climate anymore where masks are mandated and. I think everyone needs to have their individual opinion on these things, and we support and provide masks and support the wearing of them, but we [00:12:00] found that even when they're mandated, people aren't wearing them. So it's really, it, it just makes life much more difficult because you're, you're then saying there's a mandate and no one's following it anyway. So, uh, it's, it's difficult, but I think everyone needs to do the best thing for them to protect themselves and those around them. And, and that's different for everybody. Dr. Linda Bluestein: And I'm so glad you brought up masking because I still mask on the plane. I mask, you know, as much as I can because to me that's such a easy way of, you know, at least maybe a little bit mitigating your risk. Um, I. I went on a cruise a few months ago and I did get the COVID vaccine before I went on the cruise, and I was still so nervous anytime anybody coughed near me. 'cause I, I generally do limit my travel to some extent for that reason. And even conferences and things like that. Um, but I think it's, the masking aspect is definitely something that can be, you know, low risk. I mean, I know some people react to the fabric of the mask and things like that, but I think it's something that [00:13:00] is definitely underutilized. Um, and even just, you know, I don't know if you've observed this, but on a plane, you know, people sneezing and they're not sanitizing their hands or whatever. Obviously there's issues with sanitizer, but, um, you know, just basic hygiene. I feel like during COVID there wasn't enough emphasis on that and like, stay home if you're sick, if you possibly can, you know, kind of a thing. So I think often we do talk about vaccination, but we don't talk about some of those other things that we can do to help each other out. Lara Bloom: Exactly. You know, and I travel a lot, um, as, as you know. Um, and so. I did mask for a while. I don't now. Um, I have found, you know, touch wood, I haven't had COVID now for a good few years. I had it three times, um, at the beginning, and I, all of those happened when I wasn't traveling. They were at home. Oh, really? Um, yeah. And so I take very high dose vitamin C um, every day. And I notice a huge difference if I even miss one or two days. Um, I [00:14:00] am, I am all about the hand, um, sanitation. I go everywhere with my, uh, sanitizer. I, I try not to hold doors. I kind of put my clothes there. Yep. Um, and I am mindful if there's people coughing or sneezing, I'll just choose to step away. I think the reality is though, what I've found, and it depends what kind of mask you are wearing, but if. If I was ill and I wasn't, you know, I didn't have COVID, or if I was sneezing, I would more likely wear a mask to protect others, because that, I think has more, um, evidence in helping versus wearing a mask to protect yourself from others. 'cause unless you're wearing the N95, you're not really gonna, you know, protect yourself from everything. So it's, I think it's more for when you may be unwell or run down and being mindful of others that, that, um, a lot of people these days are wearing a mask. Um, but yeah, it's difficult. And, and the amount that I travel, it's, I'm very lucky, [00:15:00] especially as I have two immune conditions. I just really look after myself when I travel. And I have, you know, touch wood stayed. Okay. But, um, I, for me, it's that vitamin C that is the difference. Dr. Linda Bluestein: I definitely, I'll, I'll tell my husband, I'm, I think right now I'm about 2% sick and I'll go and I'll increase my vitamin C, my vitamin D. Um, I have a whole slew of things that I take and, um, generally speaking, yeah, like you said, touch wood, um, you know, I generally stay very healthy. Um, would you be willing to share what your dose of vitamin C is? I'm sure there's people that are gonna ask. Lara Bloom: Yeah. And you know, always consult your health professional. Of course. Yes. Um, but for yours, but I, um, I went on a trial many years ago for vitamin C, um, with my immune deficiency that I have, which is MBL deficiency. In pneumococcus deficiency. 'cause I was getting pneumonias two to three times a year. Um, and at that point I went up to 5,000 milligrams a day, um, which is pretty high, uh, [00:16:00] powder. And I didn't have a PMO from 2014, uh, no, from 2011 until COVID. Based on just that protocol. And then I got COVID and then I got you Moon. Um, but um, my day-to-day amount is about two and half milligram. And then when I travel or unrun down, I bump it back up to 5,000 and you just gotta make sure you are really, uh, well hydrated. Um, and, and other than that, I haven't had any issues. I make sure I take the powder so it's very clean. It's not, you know, uh, in a pill form. 'cause sometimes they can add other stuff. But I really. Feel like that's night and day for me when I'm on that. And there's a lot of evidence now on, on the benefits of vitamin C with on connective tissue. So I'm really, you know, intrigued as to, um, what that is. And I know in, in vascular [00:17:00] EDS, uh, that's a, a vitamin C as part of most people's protocol. So it, uh, I, I, I'd love to know more about why it helps me so much, but it does and I'm not messing with it. Dr. Linda Bluestein: Yeah. Yeah. It also helps stabilize mast cells and we know that humans can't make extra vitamin C under stress like some other animals can. So it makes sense that we do need more when we're, when we're stressed. So, so thank you for sharing those extra details. That's really helpful. Um, we're gonna definitely link some of those, um, hedge studies to the bendy bodies podcast.com website. Um, do you have a. Other updates on either head. This could be, this could be two hours by itself. Um, updates on Hedge the DICE Registry or other major society led initiatives. Lara Bloom: So there's a lot going on right now. Um, I would definitely encourage people to check out our website on, on, uh, the heads and HS criteria, study updates, the hedge page. All, all of our updates on those research, um, [00:18:00] initiatives are on there. As I said, the biggest finding that came out of the hedge study is that they couldn't replicate, um, the Cal Crane, the KRK 15, uh, finding that the Norris lab found there was nothing with the, um, uh, THR uh, genes. And they also, um, there was another one that they couldn't, that had been looked into the Tenex Andex, um, uh, gene as well. So it was more telling us what we, more validating what we don't know than again, what we do know. Um, but it also, um. Showed that there's, there's more things to, to keep looking at. Um, and so I think that's exciting. And then of course, this, this immune dysregulation work that's coming out that, um, uh, a lot more research is going, research funding is going into that area. So I'm, I'm hopeful that that's gonna yield some really exciting results. Um, the DICE registry we have [00:19:00] around or total now, because we've got some legacy registries from when we were on a couple of other platforms, but we're over 20,000 people now are on the DICE registry, which is unbelievable. Wow. Largest collection of, of people with EDS and hsd ever. Um, and. We've got our first couple of hundred people enrolled on the Biobank, and the aim is to have a thousand people by the end of next year. So that's gonna be even more samples that people can use and study on. I think the biggest bulk of work that we've focused on right now is the road to 2026, and that's really taking up all of our time and energy, um, and focus and things that are happening in parallel to that, um, that may come out before the publication and may impact it or may not. So, so you just have to go with what you know right now. And all of the committee and the consortium are working on everything related to that at [00:20:00] the moment. So a year, almost a year and two weeks left until that comes out. And, Dr. Linda Bluestein: and, and speaking of the road to 2026, I know that so many people are, you know, looking forward to it, but also kind of nervous about it. Um, it's gonna be, like you said, producing this, you know, updated classification, diagnostic pathways, um, et cetera. What are you thinking are the biggest scientific and logistical obstacles to achieving those goals? And what should patients be aware of and or, you know, what can we say to maybe alleviate some of their concerns? Because I know when people hear about this, they often get really anxious about it. Lara Bloom: So obviously there's not, I can't say too much. Um, everything is embargoed until the publication. That is not the society's decision. That's how publications work. Um, but what I can say is that this work was done, you know, when the 2017 criteria came out. There hadn't been [00:21:00] one for two decades, and everyone knew that change was needed. There hadn't been, there wasn't the level of funding capacity or collaborative efforts that enabled us to know more than what came out in 2017. And it was really more of a research criteria than anything else. And it led to things like hedge, which have led to all this discovery. So it, we had to do that to have some breakthroughs and make some headway. But I think over the years, what has has come out of it is that there's a lot of gray and people aren't clear what is heads, what's HSD, is there a difference? And the heads and HSD criteria study recently announced in at the symposium that the initial results that we can share is that it looks like heads and HSD are one in the same spectrum, one in the same condition. Now what does that mean? You know, what will it be called? What, how, what will it sit under? [00:22:00] How will it be classified? Will comorbidities be involved? All of these questions are what is being worked on now. Um, so now we know it's one in the same thing. Now we know there's not a single gene causing it. You know, all these things that we're knowing from all these parallel studies, and also I say we, it's the society have funded and facilitated this work. There are three or four of us from the society that have a seat round the table, bringing our lived experience, expertise, and bringing all of the data that we have from our community on the reality of what it's like to live with these conditions. Right now. That's our role in this. Our role, we don't have a vote, so we don't vote for the outcomes that is left to the independent experts around the table. We don't decide what things are called, how things are classified. Our role in that is to say. This sucks right now, and it needs to be better. And this is what the, these are what the issues are and these are what people are [00:23:00] facing in Sweden, in America, in Africa. And you know, this is the reality on the ground. We're telling you the narrative, you are bringing the science and expertise. And then how can we facilitate that to come out in this publication that will hopefully improve diagnostic, um, odyssey, the time to diagnosis and getting closer to models of care and diagnostic realities that when you are diagnosed, that you have management and care. And that's not the reality right now in most of the world. So it can only get better. Um, but sometimes to get better there has to be change. And so what I can say is change is coming and we all have to hold on tight because, you know, I, I don't know exactly what that change looks like now because the work is still ongoing. I, I do know that change is coming and as someone that lives with this as well and is diagnosed with hypermobile EDS, I'm gonna be impacted [00:24:00] too by whatever that change will be. So, you know, as a patient, I also have anxieties about what that means as a CEO of the organization that's gonna get the community through these changes. I have immense anxiety and and concerns, but what I do know and what I believe in and what I feel very strongly in is that this change is needed. It's necessary, it's important. And although it might be difficult in the beginning to navigate the change, just because change always is difficult, I think it's what's needed to take us all to the next stage. And I think, I think it will be a positive thing, albeit, you know, we are now in a position as an organization where we have the funding to rely on partners and external stakeholders to help us. Tackle the challenges that any change will bring. So, you know, we could have found a single gene marker fired for mobile EDS and it would still be change, and it would still need [00:25:00] navigating. So I'm not necessarily preparing people for anything bad, it's just whenever there's change, you have to think about ICD 10 codes, ICD 11 codes, insurance implications, access, you know, g uh, primary care diagnostic pathways, uh, the European reference networks, every other national organization out there. So there's so much to consider that of course, it's gonna impact everyone at, on some level. But I am optimistic and I am hopeful, and I do believe that change is needed. And our role in it is, like I said, to bring the voice of the community to the table and then to take the science that they bring and to try and communicate that and embed it in the best way for the first time ever. I believe I, I believe that we have the people and the tools for the first time ever to actually have a stab at systemically changing the reality of access and diagnosis with these conditions. So I'm excited. I'm already tired. [00:26:00] Um, for next year. I'm exhausted for 2027. Um, but we just keep going. And if I thought this year was busy, it ain't nothing compared to NextGen. I just can't even look at my calendar for next year. It's almost fully booked until this time next year. Oh, wow. That's, that, that's crazy. It's, it's good. It's good. I'm ready for it. And, um, I'm, I'm, I'm excited. Dr. Linda Bluestein: That fits in perfectly with what you said last time, about the first 10 years kind of laying the foundation, and now you're able to just do such in incredible things and, and you're still in your garden office, right? I think I heard like a little ambulance go by or something. I hope that person is okay. Yes. Still in the garden office. So I, that was so beautifully stated and I shared something on the podcast about, you know, I have a Hypermobile EDS diagnosis and I was sharing that, you know, my diagnosis might change as, as well. So, you know, I don't know. I, you know, I'm a patient too, so like you, like you just said, [00:27:00] so a lot of people though. After I talked about it on the podcast, there were some people that were very upset and, um, so I really appreciate you sharing a lot more about the process. And we want people to be accurately diagnosed. Having a diagnosis if it's not accurate, is not helpful to you, and it's not helpful to the community at large. So that's really what we need is people to be, we need things to be defined as well as they possibly can be. And then we need people, individual people, to be as accurately diagnosed as they can be so that they can get the help that they need. Lara Bloom: Exactly. And I think the reality is, is there isn't anywhere right now where having heads or HSD. Gives you access to what you need. There's issues with both, and there's issues culturally and geographically different all over the world. Um, in somewhere like Australia, for example, and some places in London, if you get to the right clinic, there's no issues with you having a diagnosis of HSD in other places in Europe, you're not gonna get anything. So, you know, and then [00:28:00] there's other places where they won't even use the term heads. It's, it's just, you know, they believe it's over medicalizing and over diagnosing. And I think the reality is, whatever it's called, whatever it's called, whatever it's being called, a diagnosis matters. And it gives you validation and it gives you an understanding of what you are living with. And so whatever it's gonna be called. It's kind of irrelevant, the actual words, what our job is, the society is whatever that diagnosis means, it means it gives you credibility, validation, access to diagnosis and access to care. And right now, neither heads or HSD necessarily give you that. So whatever the change will be and, and it, and it, it's, you know, not likely to be anything new or, or either one. I don't know how it's gonna land. I guess what I'm trying to say is it can't get worse than how it is right now. And I think it just needs, people need to accept that we have to move [00:29:00] forward and all of these studies that are happening right now are gonna inform those decisions. And I think critically, um, we are, again, our role in this is to say to the scientists, well, in your opinion, it might not be important what it's called, but the reality is it is important. And it is important that that. However it's termed, however it's classified, however it's described, is accurate representation of what people are living and experiencing every day. And so that's where I come in, that's where the organization comes in. The people we've got round the table of saying, you know, that's the, the, the, the detail underneath the scientific decisions are where then we can play a role. And I think it's important. I think diagnosis means a lot to people and I completely respect and understand that as someone that waited 13 years for mine, I know how much it means. Dr. Linda Bluestein: Yeah, that was a pivotal point for me getting the diagnosis because suddenly everything makes sense. Um, and it probably was papers of [00:30:00] yours that I was first reading when I didn't know what was going on with me and. I started just like a lot of people started reading different things and going, wait, I mean, I was a, I was a physician, I was working as an anesthesiologist. I had learned about, you know, aler Danlos in medical school, a ti you know, like most people say, a couple senses, whatever. Um, so yeah, it's, it's pivotal when you actually have a name to put to what you're feeling in your, in your body. Um, and I wanna talk about the 2025 Community Experience Survey. Um, it on the website, it wasn't clear to me if it's still open or not. Do you have something that you can share about that and also why you want people, why you think it's important for people to register on? Nice. Lara Bloom: So. It's not open anymore. Um, it's, we used the data from that to help us with this process. That was how we brought the community voice to the table. And critically it's being, it is one of the standalone papers in the publication next December. So the community experiences [00:31:00] are going to be published as well as the scientific outcomes. Because as a professor in lived experience and patient engagement, it was very important to me that we brought forward the lived experience of what, what these conditions mean. Ah, Dr. Linda Bluestein: excellent. We're gonna take a quick break and when we come back, we are going to talk about what clinicians, what Lara's advice is for clinicians who feel unprepared to manage complex EDS patients, um, what they can do. 'cause we know that we have a lot of clinicians that listen to the show, so we are gonna take a quick break and we'll be right back. I'm super excited to tell you about the Bendy Bodies boutique. I'm so proud of our fierce styles and flexible designs. These are created by hypermobile artists. For hypermobile shoppers, there are so many fun items from clothing, accessories, home goods, and my favorite are the bags. I especially love the weak weekender tote with one of the EDS tough designs. Whether you're shopping for yourself or [00:32:00] someone you love, there's so many options to choose from. A portion of the proceeds goes to support EDS nonprofit organizations. For more information, please visit bendy bodies boutique.com. 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. Okay. We are back with Lara Bloom and, um, I'm so excited about this road to 2026 because I do feel like it's so desperately needed. I remember when the announcement was made with the 2017 criteria. It was you and Claire Frank Amano. Right. Dr. Frank Amano who had, yeah, and I was like, oh my gosh, this is gonna be huge and this is probably gonna upset a lot of people. I was at that 2017 conference in Las Vegas and [00:33:00] it was, it was quite, quite interesting, but it's so. Exciting to see how the research has been, has been growing, and all of the incredible projects that the society is involved with on various different levels. How does the society decide and prioritize, um, which projects to advance? Lara Bloom: So it's really based on funding, on the kind of funding we have. We some have something called a, a research in a circle where we encourage people to submit proposals, researchers, academics out there. Um, and then we have a pool of, of high net worth donors who then look at those proposals and decide what they want to fund. So at the moment, being at the mercy of an organization, which has no government funding, no, um, industry funding, we are reliant on individual giving. Now, where we get research funding that's unrestricted, we then will do an RFA, which is a request for, um, applications. And then it's much broader. It's, it's, you know, we have an [00:34:00] independent scientific committee that then decide on what gets funded. Any proposal that comes through that inner circle is vetted by our, uh, chief Scientific Medical Officer and, um, our medical and scientific board monitor all the outcomes and, and the reporting that's done. So there's a lot of good governance around it, but ultimately we are at the mercy of having only that, you know, type of funding available to us. So there is an element right now where there's a huge influx of research going into Heads and HSD because the donors we have, have children with that condition and they are emotionally invested in trying to make their children better. Um, and it, you know, that. Meets our mission and matches our research priorities. So we're happy to do it. Um, but it does mean that we don't have nearly as much as we would like for the monogenic types, the rare and ultra rare [00:35:00] types. 'cause currently we don't have any high net worth donors that are giving in that area. So, you know, in an ideal world, we would be giving to equally to all the types of EDS. But like I said, right now, that's not the reality. If there are any high net worth donors out there, um, that are emotionally invested in those other types, please reach out because we, we are here ready with our governance structure set up, ready to give out that, that research funding. So, um, it's a good, you know, listen, we've, we've funded 40 to $45 million in the last five years in research. Wow. I mean, we've done amazing things. And when you think that that's just from parents, it's as extraordinary. And I'm really proud of us, especially as when we launched this. The most we received one year was 25,000 for research. So, Dr. Linda Bluestein: wow. Lara Bloom: It's, we've come a long, long way and we have made possible all of the discovery pretty much that has happened, um, in the past few years, [00:36:00] uh, in some way we have been behind. And that's really exciting and that's something we're really proud of, Dr. Linda Bluestein: as you should be. That's tremendous progress in such a short period of time. And we know that, uh, more patients are getting diagnosed earlier. So long-term outcome data would be something that would be really, really helpful to, to have. Do you know if there's plans for natural history studies or expanded longitudinal registries to track these trajectories, complications, um, et cetera, over decades even? Lara Bloom: So we launched a natural history study at the end of last year. Um, it's initially looking retrospectively at data from Claire Franco's clinic at GBMC and at iu. Um, and we have intentionally paused the retrospective, uh, sorry, the prospective collection of data until the new criteria is published so that it all then matches the right terminology. And, and it is with all the changes, it seemed redundant to do something for a year and then all the [00:37:00] data points be changed because obviously it's all gonna be done through the, the registry. So please watch out for that at the beginning of 2027. That's one of the first things we'll be launching. The surveys to join that natural history study. We don't know enough, so we're really excited for that data. And the other big study that will be launched as soon as we can after the publication of prevalence studies because no one has a clue how many people are actually living with this. I think, I think it's safe to say now that we. Globally agree that heads and HSD is not rare. Um, but how common is it and how rare are the rarer types? So we just can't answer it. You've got this, the only published figure is this one in 5,000. There's been other attempts at trying to get a number, but they've not been done. Right? They've concluded EDS is not rare or that's ridiculous because all of the types bar one are rare. So they've just, it, it's been, you know, we've gotta be very careful what we say when we say EDS isn't rare. Hypermobile EDS isn't rare, right? All the other types are rare and ultra rare. [00:38:00] So I think some really reliable, um, well done prevalence studies are gonna be our priority next year, year after 27. Dr. Linda Bluestein: And speaking of the 2026 guidelines, do they include, um, sex and gender specific considerations? Things like hormonal influences, um, difference in symptom presentation, documented healthcare biases? We know that there's differences in access to care. Um, do you know anything about that? And I know that I know that there's only so much that you can, that you can say. Is there anything though, that you can share about underrepresented, um, populations? Lara Bloom: So we will be announcing something soon. I can't talk about at the moment, that's gonna be looking specifically at models of care. And that body of work is gonna really be where those issues are, are tackled. Um. In terms of the actual publication, I, I can't go into the details of, of what will come outta those. Then they're being written as we speak. They're not written yet, so I can't, [00:39:00] I can't comment. And some of them haven't even started, uh, because they're still building the evidence and doing literature abuse. But I know that Dr. Claire Franko is doing a hormone study, um, that will be very interesting when the results of that come out. Dr. Linda Bluestein: It was so exciting to see that you addressed the World Health Assembly about diagnostic delays, barriers to care inequities, and the mental health impact of these fragmented systems and complicated conditions. Um, what was, what do you think the key message was that you brought to this global stage, and what was the real world change that you most anticipate? Lara Bloom: So I don't anticipate the change immediately. Um, you know, we, we've been attending now, and I've been attending the WHA for a good three, four years. And this year, each year it gets a little. More EDS being, uh, part of the conversation, but it's largely been through me being on a panel where other people's events versus the topic being EDS.[00:40:00] However, because of attending all these events and because of the networking and collaborations that have happened in the next couple of years, uh, in May, 2027, EDS will be hosting our very own event at the WHA, all about the new diagnostic criteria and models of care. And that will be part of the announcement that we make soon about the models of care work. So watch this space. Incredibly exciting and I think so in the next two to five years, that's when I think we'll start to see that change ripple out and the domino effect of being able to have a seat at that table. Dr. Linda Bluestein: What do you suggest for clinicians who are. Just learning a little bit about these conditions and maybe they feel like they don't have enough tools in their toolbox and they want to help patients. And I want you to talk a little bit about the ECHO program, of course, but what are some different, like levels of ways that they can learn more so that they can [00:41:00] actually, you know, make a difference in their patients' lives? 'cause this whole, you know, there's nothing you can do, uh, you know, uh, message that we keep trying to debunk is something that I still see over and over and over again. Lara Bloom: I think the first thing I'd say is don't be scared of us. Um, you know, we're not, we're not scary. There is no such thing as needy s Specialist. I've said this many times. All it requires is someone who's willing to listen and learn, potentially if they haven't, uh, come across the condition before. But it's multi-systemic. So, you know, the ideal place for this to, to start from is primary care. And I would just encourage. With any disease, and I say this, there is not enough listening that happens in the clinical pathway. And so if people listened and validated what the people in front of them were experiencing, I think would receive much, um, less times in in that diagnostic odyssey. But I think, um, you know, understanding that a female [00:42:00] can walk into your doctor's office with a racing heart, gi pain, and a bad knee, and it's not anxiety. Um, and to not see each issue as an individual presentation and to actually put everything together and think about what could be causing everything. And sometimes there isn't. But as we know with EDS and HSD, there is, um, and equally. What can be just as dangerous as when you do have a diagnosis and then you have issues that come up. Everything is then put down to your EDS and HSD. Right? Right. And then, you know, some really significant health issues can be missed because it's like, oh, it's just because of your chronic health condition. So it, there's a balance there of, of, um, of how people need to be tuned into that. And I think it comes back to advocating for yourself. And, you know, I wish we didn't live in a world where people were so threatened by [00:43:00] educated patients, but they are. We live in that world, and doctors don't like it. And I, I would, I would urge them to see that instead of a threat. Something to be frustrated by, to instead see someone in front of you that's clearly been working through a lot of challenges and barriers to get the care as they need, and that this is a person that really needs you to sit and listen to what they're saying. And I think if we introduce listening as the first point of care, we'd all be a lot better. Dr. Linda Bluestein: Yeah, that's so well said. And I think that's fantastic advice for clinicians. Do you have advice for patients who are trying to get their clinician to listen? Lara Bloom: I think I always recommend going with a list and as much of that list can be, again, overwhelming and threatening to a doctor. What always happens is you get into the room and you forget everything and you're like, oh, and I didn't mention this and I didn't mention that. And to try and, you know, even if you say, could I email this to you? Could this be put on my file? Can I leave this with you so that it's logged somewhere, [00:44:00] this myriad of symptoms that you are experiencing. I also think it's important to say, you know. I've been looking at this, what do you think? Do you think this could be something instead of, you know, this is what's happening and, you know, almost not caring about their opinion. And I've found that I've had much better reception from people when I've, I've kind of had that approach. So, um, I think it's, it's a really hard time to be a patient more than ever. It really is. Um, and I wish I could give more hope and, um, kind of pockets of wisdom for people, but it's tough. Um, but I, I would, you know, try not to rely on Dr. Ai and Dr. Google. Try and understand your rights of being able to keep, uh, re requesting for another doctor and a new person to see. 'cause you have that right. Um. And [00:45:00] just, you know, look online about self-advocacy and, and what to do about advocating for yourself in those situations. 'cause there are, there are support out there, there is support out there to help you through that difficult process. Dr. Linda Bluestein: I think another thing that, that I try to stress with my patients that are, you know, seeing other clinicians and then they come back and report negative experiences that as much as possible, and it's obviously harder to do than it's to say, but trying not to take it personally. Um, I, I even went to a doctor's appointment with a family member who does not have EDS and is very, like, straightforward, had a very straightforward problem and even they got gaslit, um, you know, the, the orthopedic surgeon looked at the images and was like, it's not that bad. And then looked at the images for the knee and, and literally said, my knee is worse. It was like unbelievable. Yeah, unbelievable. And this was a, this was a male, uh, male. You [00:46:00] know, we know in general, females are not treated as well as males. So this, this, this was, you know, a white male. So they had, they had like more things going for them and yet that still happened. So I think that um, if we can try not to take it personally and also try not to gaslight ourselves. 'cause I know that for me, not now, but before when I was really frustrated and so much pain and trying to navigate all these symptoms, I would give the doctor too much power over me. And if they were not believing me, then I would stop believing myself. So I think that believing in ourselves and knowing that we're feeling what we're feeling is also really important. I agree. Yeah. And speaking of advocacy, um, one of the followers listeners asked me to ask you how other people can get involved in EDS advocacy. Lara Bloom: There's a few different ways. There's, on our website, there's a get involved button and there's the echo advocacy course that's happening at the moment. There's also other ways to [00:47:00] volunteer, share your story, our events online. Um, there are, um, ways to do professional advocacy as well, um, that I believe that information is on our, on our website. Um, but it's, it's never been a better time to be an advocate and wanna try and professionalize that. I think there's lots of options out there. Listen, everyone always says, you know, how did, how did you, how, how can I do what you are doing? And I think. I, I am an advocate, but I'm a CEO primarily. I, I run the organization and, um, my advocacy is still to a certain extent, uh, something I do on the side because it's very difficult to get a job that is paid and that you can advocate full time. Um, I've been in this field now 15 years and I started as a volunteer and I started as an advocate and I started as someone that just needed something that wasn't there. So I tried to build it. Um, and I think [00:48:00] you have to move from the point of just telling your story to being the voice of many, and that is quite difficult to do. I very rarely talk about me anymore. And sometimes I forget I have the condition. 'cause I'm so big talking about other people's experiences and, and you know, it, it, I'm like, oh yes. And I, I, people say, how do you get into this? And I'm like, oh, and I have it. And so, but it's not what I lead with. And I think that that's, um, the difference of kind of professionalizing it into a job. It's no longer your, just your narrative and story. Um, and advocating for many. And I, and I think that, that there's options for both and neither are more important than the other. It's just different options of how you want to advocate. Dr. Linda Bluestein: We know that so many people with EDS and HSD live with significant financial strain. Can you highlight the so society's free or low cost educational resources, um, you know, so that people know how they can utilize them. [00:49:00] Lara Bloom: Sure. Yeah. I mean, all of our information on our website is free. Uh, we have a YouTube channel as well. We have webinars, we have videos, we have translated content. Um, we have a lot of events and they are paid for because it costs a fortune to put on events. But then we have scholarships for every single one of our events. And we also then have the content available online for free, um, a period of time after that. So check out our website, check out whatever area on the body you are interested in, and then we have lots of there. We also also have something called Claire's Corner, which is Dr. Claire Franca, doing loads of educational videos about learning and understanding more about the condition and the comorbidities. Dr. Linda Bluestein: Okay. And then can you also talk about the provider directory? 'cause I, when I asked for questions, um, to ask you, and I got lots of great responses. One of the people responded that they were frustrated over the provider directory because they must have come across somebody who, at least in their opinion, [00:50:00] did not have much in the way of expertise on EDS and HSD. So can you explain a little bit about how that directory works? Lara Bloom: Sure. So, we, uh, cannot manage and maintain every person on that website. What we have done is provided a space where people can find out who is out there, and then it's up to individuals to look online, look on forums, look for feedback, look for reviews, and make the decision if that's someone they want to see. It for us to, to, I mean, it's just not our role as a nonprofit organization to be the people that determine people's experiences at these clinics. 'cause someone might have a fantastic experience and others may not. We also don't add people to the directory, so people have to add themselves. Um, and we, you know, we have a disclaimer on there for that reason because we, we cannot give absolute conviction of, of the clinics and the services they provide. So you have to use that with that [00:51:00] knowledge and then do the research that that one does when deciding whether to see a healthcare practitioner. Dr. Linda Bluestein: Are there any other thoughts about the road to 2026, the updated criteria and people who, like you said, fall in the gray zone? Um, how the society will communicate changes in a way that respects people's lived experiences and prevents fears or losing diagnoses and. Are there gonna be any pathways for patient feedback, um, or community input if the new criteria fails to reflect certain phenotypes? Lara Bloom: Listen, everything we're doing is, is trying to represent the voice of lived experience, um, and to make things better. That is the primary goal of this entire effort to make things better. Um, there's no one's interest to create something that is gonna make it harder for people to get diagnosed. Um, we are gonna be doing a hell of a lot of work in [00:52:00] providing resources, toolkits, you know, webinars, events to, to communicate this information for people to understand what that means for them. We're also working on various other things, like I alluded to that are gonna be announced over the next year. People we're partnering with, um, efforts we're making to, to really. Land. Um, and we are also then holding something called listening labs, um, across 2027, which we're holding one a quarter in every region where we are inviting people to tell us the reality of what this diagnostic criteria change has meant. Um, and in an effort to have real time feedback of, of what that means. And, and these things are never, uh, final or forever. You know, it, it takes years. It's been almost a decade since the 20 17 1, but if we start hearing on the ground that [00:53:00] X or Y just is not working or there's this new challenge that wouldn't, hadn't been thought of, there could be things that as an organization we can then do lobby advocate for that can improve those things. So, um, rather than change science, 'cause that's the point here, we can't change the science, but we can change. Um, well, I, we will try and then change and have impact on what that science means and how we can make it accessible. Mm-hmm. Mm-hmm. So, yes, we're gonna be listening and learning, uh, with the community from day one of those new changes. Dr. Linda Bluestein: You already talked about how wonderful it would be if there's people that could fund research on the rare types. Um, if funding was unlimited, what moonshot initiative would you launch to transform EDS and HSD Care worldwide? Oh Lara Bloom: goodness. Um, I think it's all gotta be about the therapeutics. Um, there's no therapeutics. The tool out there I'd love to look at, and we are [00:54:00] starting to look at drug repurposing, um, gene therapies. I think gene therapy would be the ideal moon shock for the monogenic. Think causing these conditions. Um, but therapeutics for symptom management is really where I'd like to go and we've got a lot, you know, listen, we've got so many things that are gonna be announced over the next year or two that I really hope will start having more of an input in real time to people because I understand that all this research be it incredible people aren't necessarily immediately feeling the, the results of it. 'cause we don't yet have a marker, for example. Um, so what can we do to try and get things to people more immediately? So, um, we're working on that kind of thing and at the moment on how we can do that. Dr. Linda Bluestein: And that's a big reason why I started this podcast. I would go to meetings and I would hear, um, in particular like the a SA when I was, you know, still [00:55:00] working as an anesthesiologist, go to the a SA American Society of Anes Anesthesiology meetings and sit there and listen to these researchers and people sharing fantastic work that they were doing, but yet recognizing that in the clinical practice this wasn't getting translated and there was such long delays. And so it's great to be able to talk to people like you and get that information available to so many, you know, thousands and thousands of people that wouldn't otherwise get to get to hear it. So, so thank you. That's really helpful. And, and what does success look like in five or 10 years for the Society, for Patients and um, for future generations? Lara Bloom: People getting diagnosed when their symptoms begin, and then when they are diagnosed, having a care pathway, both for their physical health and mental health for life, not just for six weeks, as is often the case right now. So care for life, the right care and that validation. Okay. Was there something that you were hoping that I was gonna [00:56:00] ask Dr. Linda Bluestein: that I did not ask you? Lara Bloom: Um, no, I don't think so. I think, listen, there's so much I wish I could say and there's so much I wish I already knew that I could share. Like I said, we're in a bit of a transitionary holding spot right now. Uh, but I, I'm, I'm hopeful that all the changes will be for the better and that people will eventually, because of those changes, get the care and diagnosis that they need, um, and that this condition will actually be one that's respected and credible and believed by so many people out there right now that just. Don't take it seriously. Um, you know that that change is already beginning, but I would love to get to a point where people don't, nobody rolls their eyes when they hear this condition. That would be massive win. Um, it's very hard when you go to places and people just don't get it. Um, so lots [00:57:00] of educating to do, but like I always say, the hardest part is the amount of reeducating that we've gotta do. And so I'm excited to have this new criteria and new classification and all of the supporting work going around that with the pathways, models of care and everything else, that we can actually have something tangible to say, this is what this is, this is what you do and this is how you care for these patients. And, and we've never had that before. Dr. Linda Bluestein: Yeah. The stigma is very, very real. I was speaking to a. Head of another nonprofit organization, and she said that in their, in, in a different country. And she said that they actually encourage patients if they're gonna be potentially having surgery to maybe not get the diagnosis before the surgery because then the surgeon doesn't often want to see them. And I was like, oh, that's, that's so backwards. And just, it's, that's very worrisome because obviously as, as a surgeon, you should want to know what you're getting into and whether a person has a [00:58:00] diet. Yeah. When I was working as an anesthesiologist, this happens so often in the middle of the night, you know, you, you're doing an add-on case and they would say, yeah, the person is healthy. And you look at them and you're like, they're not healthy. They just haven't been to the doctor in 20 years. They have all these conditions, but they're not diagnosed. They're not managed. So not having a diagnosis and not trying to work towards managing it doesn't benefit anybody. Lara Bloom: Exactly. It's, it's very frustrating and there's, there's lots of things that need to improve and get better. Dr. Linda Bluestein: As you know, we end every episode with a hypermobility hack. Do you have a hack you can share with us? Lara Bloom: Goodness. Um, I would say the one hack that's seen me through for now 12 plus years is movement. Um, I went to the gym this morning for the first time since September, but I have been moving daily. I have a little treadmill under my desk, and so I, I moved daily. But that weight-based work is really a huge difference for me. Um, I think my [00:59:00] life changed completely when I started focusing on building muscle and letting it jo to kind of support the, the job that my tissues weren't doing. Um, I think that, and focusing really on what I'm eating and not thinking of it as a diet, but just really focusing on clean eating and avoiding ultra processed food and, and doing that kind of thing has really made the difference. For me. Um, but everyone is different and, um, everyone needs to find what works for them. Dr. Linda Bluestein: That that's for so true for me as well. And um, like you said, it's the giving your body the building blocks and, you know, finding those things that you can do to slowly start making improvements. That's what I tell my patients all the time, is not like you're gonna wake up tomorrow and feel a hundred percent better. We're trying to make some slow, steady progress. It's not necessarily gonna be linear, but at least hopefully we can get to a place where we're significantly better, you know, a year from now or six months from now or something. And that that building, that muscle mass is so huge, [01:00:00] so, so huge. So, well, I'm so grateful to have this time to spend with you and thank you so very much for coming on the Bendy Bodies podcast. Um, before we go, um, is there anything else that you wanted to share and can you let people know where they can find you? Lara Bloom: Yeah, absolutely. Um, I would just like to share, you know. Join us in the next year. We are with you, we are partners with you. Um, and we will do our very best to make this change, whatever it will be, um, as easy, um, for our community as as possible. Um, you can follow us at Ellis, you can follow me at Lara Bloom, type my name into most things and you'll find me. Um, our website is s danlos.com and um, yeah, very happy to chat to anyone, ask any questions, answer any questions, reach out to me on Instagram. Don't really go onto Facebook much anymore. I'm not on [01:01:00] TikTok, but I am on Instagram. Definitely not on x. Uh, but LinkedIn and Instagram is where you'll, you'll find me the easiest. Dr. Linda Bluestein: Well, thank you so much again. It was such a pleasure to get caught up with you and I really appreciate you taking the time. Thank you so much. I appreciate the opportunity to. Well, that was such a fantastic conversation with Lara Bloom, and I just love hearing about all the incredible things that the society is doing and all the progress that's happening in the research space. I think there's so many reasons for us to be hopeful, and please share the podcast and share this information because there are still so many clinicians who have no idea what it means when somebody comes into their office with seemingly disconnected symptoms and things like. Joint laxity, GI complaints, so they don't know how to connect the dots. So please, please share the podcast because this really helps get information into the hands of [01:02:00] people who can make a difference in the lives of patients. Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. With the Hypermobility md, I have lots of other resources including my newsletter, the Bendy Bulletin. Check out my website, hypermobility md.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 conditions. Did you know that I 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 is, I've got your back. Check out my coaching and mentorship options on the servicesPage@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 by producing team at Human Content Pods on TikTok and Instagram. You can find human content, my amazing producing team at Human Content Pods on TikTok and Instagram. You can find full video [01:03:00] episodes of every week on YouTube at Bendy Bodies Podcast. As you know, we love bringing on guests with unique perspectives to share. 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