The Roadmap That Could Change EDS Forever with Lara Bloom

[01:05] 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 syndromes, 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 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. And the Global Registry and Biobank are expanding rapidly, fueling major research efforts into genetics, comorbidities, and long-term outcomes.
[02:05] 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. As always, this information 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. Here we go.
[02:40] Okay, I am so excited to be here again with Lara Bloom. How are you doing today?

[02:46] Lara Bloom: I'm really good. And how are you?

[02:48] Dr. Linda Bluestein: 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. 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. Just super excited to dig in. There's been so much happening in the EDS space, so it's an exciting time to be doing this kind of work. The recent research by Dr. Chip Norris and his lab has talked about, could hypermobile EDS actually be a neuroimmune condition? He says, is it actually that the immune system is actively dysregulating or degrading connective tissue? How does that research — and I know it's one study, so we have to take it into context, of course — has that influenced how the Society approaches research, education, clinical priorities? And does that shift make you more hopeful than ever that we're going to actually be nearing a major breakthrough?

[03:50] Lara Bloom: So it's actually not one study, it's more than one study. At the recent scientific symposium in Toronto, another partner of ours, ICR, who used the same HEDGE samples as the Norris Lab did, also found the same outcomes on a much larger cohort, which really backs up this theory that we are looking down a different lens than we previously thought we were. And this immune dysregulation is incredibly exciting. We're plowing a lot of money and time into more research into these areas to try and validate what these first few studies have found, replicate it, and try and find out more.
[04:38] I think this is a really exciting time. It's really promising. I think that in the next 5 minutes to 5 years — who knows how fast — we're going to know a lot more. And it's because of studies like this. Really it's because of HEDGE. All of these studies have used the HEDGE samples. Everything that we have discovered, or found, or realized we haven't discovered — because not knowing stuff is as helpful as knowing stuff — has all come from those 1,000 samples. So that really paved the way to the direction of travel that we're in now for these conditions. And it's incredibly exciting. I definitely remain very hopeful.

[05:22] Dr. Linda Bluestein: And there are people listening to this show who are brand new to the EDS world, and there are people who are very experienced and have lots of knowledge. Can you just briefly explain what the HEDGE study is — or what the HEDGE samples are — just so people have that framework?

[05:38] Lara Bloom: Absolutely. In 2018, we received a large donation of initially $1 million and then $2 million — someone matched it — to whole genome sequence 1,000 people who met the 2017 diagnostic criteria for hypermobile EDS, in the hopes of trying to find a marker. We recently shared the first outcomes of the study, which showed that there was — and this wasn't a surprise — no found 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.
[06:19] But as well as the actual HEDGE study, which was with an analyst at the Broad and with Christina Lakaitis, there have also been other studies that have used the same samples — ICR and Norris Lab being just two examples. There are others: Marina Colombi's work that also yielded some outcomes in Italy, and others. A lot of people are now looking at these and trying to find answers. We've now had our first enrollment event for our global biobank. So we're adding more and more samples — not just blood, but we're looking at urine and skin and plasma and all sorts of things — to really diversify the research that can now be done with the knowledge that we now have.

[07:06] 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 sometimes subject to interpretation and some subjectivity. So I think that's just so wonderful. And in thinking about the immune system and mast cell-directed therapies, 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. I've really found with my patients that 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. Is the Society looking at that? Are they observing similar patterns? What are your thoughts on MCAS, and is it universally present to some degree in hypermobile EDS?

[07:58] Lara Bloom: I don't think we can say that yet. But I think what we can say is that there are a cluster of comorbidities that we see time and time again to be very prevalent. And that is the mast cell, GI, autonomic dysfunction, and also bladder dysregulation. So we are 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 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.
So what we have had is an HSD criteria study that's been running the past few years — a multi-centre, global study — trying to find out first, is the current criteria fit for purpose? And if it's not, what should it be? That work is going to be part of the publication that's coming out at the end of next year, which is going to give us a new diagnostic criteria and classification for all the types of EDS and HSD.

[09:03] Dr. Linda Bluestein: Perfect, because that was my next question — you already answered it. We're going to talk about the Road to 2026 more, but that's going to be coming out at the end of next year. Great. That's great to know. I want to 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. Given how much you travel and the 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?

[09:38] Lara Bloom: Personally, I'm definitely not anti-vax. I had my COVID vaccines. I have been vaccinated. I've vaccinated my daughter. I believe in science, and I think we're very, very lucky to have the vaccines that we do have. However, I think that COVID-19 presented a lot of challenges with the speed and the rollout and the process of how they came to be. And as a consequence, there was a lot of distrust and unease around getting the vaccines. I certainly had some complications from my second and third vaccine. I still had them because I believed that the benefit outweighed the risk.
[10:20] But currently, EDS doesn't get you on what's called in the UK the shielded list. So people aren't able to get an EDS-specific vaccine pathway at the moment. And I think especially with recent studies that have come out, that's something 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.
[10:47] As an organization, it's very difficult because we cannot impose what people should do. It's person by person. And whilst we encourage people to be vaccinated, because that could help, there are other reasons why people may not be able to get vaccines or want to. And like you said, it's a hot topic right now with varying different opinions out there. So we don't have a stance as an organisation, and nor do I think we should. But we certainly, during the COVID protocol times when people had to get a vaccine to come to events, we followed all the adherence from the WHO. And that's really where we seek our guidance from and follow the WHO guidelines.
[11:41] It's difficult when putting on events. A lot of people are upset that we don't have compulsory masks at our events anymore. The irony is that we did have them for many years, much longer than other organizations were. And I think the last conference we had with a mandate was Dublin. And I think there were 3 people in the room wearing masks — with a mask mandate. The point is, you have to leave it to people's decision. We are not living in a climate anymore where masks are mandated. Everyone needs to have their individual opinion on these things, and we support and provide masks and support the wearing of them. But we found that even when they're mandated, people aren't wearing them. So it just makes life much more difficult because you're saying there's a mandate and no one's following it anyway. Everyone needs to do the best thing for them to protect themselves and those around them, and that's different for everybody.

[12:45] Dr. Linda Bluestein: I'm so glad you brought up masking because I still mask on the plane and as much as I can, because to me that's such an easy way of at least maybe a little bit mitigating your risk. 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, because I generally do limit my travel to some extent for that reason — even conferences and things like that. But the masking aspect is definitely something that can be, you know, low risk. I know some people react to the fabric of the mask and things like that, but I think it's something that is definitely underutilized. Even just — I don't know if you've observed this — on a plane, people sneezing and they're not sanitizing their hands. Obviously there are issues with sanitizer, but just basic hygiene. I feel like during COVID there wasn't enough emphasis on that. Stay home if you're sick, if you possibly can. So I think often we do talk about vaccination but we don't talk about some of those other things we can do to help each other out.

[13:51] Lara Bloom: Exactly. I travel a lot, as you know. I did mask for a while. I don't now. Touch wood, I haven't had COVID for a good few years. I had it 3 times at the beginning, and all of those happened when I wasn't traveling — they were at home.

[14:14] Dr. Linda Bluestein: Oh, really?

[14:15] Lara Bloom: Yeah. I take very high-dose vitamin C every day and I notice a huge difference if I even miss 1 or 2 days. I am all about the hand sanitation. I go everywhere with my sanitizer. I try not to hold doors. And I am mindful if there are people coughing or sneezing — I'll just choose to step away.
[14:41] I think the reality is, and it depends what kind of mask you are wearing, but if I was ill, I would more likely wear a mask to protect others, because I think that has more evidence in helping versus wearing a mask to protect yourself from others. Unless you're wearing an N95, you're not really going to protect yourself from everything. So I think it's more for when you may be unwell or run down and want to be mindful of others that a lot of people these days are wearing a mask. But yeah, it's difficult. The amount that I travel, I'm very lucky, especially as I have two immune conditions. I just really look after myself when I travel and, touch wood, have stayed okay. For me, it's that vitamin C that makes the difference.

[15:38] Dr. Linda Bluestein: Yeah, I'll tell my husband, I think right now I'm about 2% sick — and I'll go and increase my vitamin C, my vitamin D. I have a whole slew of things that I take. And generally speaking, touch wood, I generally stay very healthy. Would you be willing to share what your dose of vitamin C is? I'm sure there are people who are going to ask.

[16:01] Lara Bloom: Yeah. And always consult your health professional, of course, for your specific situation. But I went on a trial many years ago for vitamin C with my immune deficiency, which is MBL deficiency and pneumococcus deficiency, because I was getting pneumonia 2 to 3 times a year. At that point I went up to 5,000 milligrams a day, which is pretty high. And I didn't have a pneumonia from 2011 until COVID, based on just that protocol. And then I got COVID and then I got pneumonia.
My day-to-day amount is about 2,500 milligrams, and then when I travel or I'm run down, I bump it back up to 5,000. You just have to make sure you're really well hydrated. Other than that, I haven't had any issues. I make sure I take the powder form so it's very clean — not in a pill form, because sometimes they can add other stuff. I really feel like that's night and day for me. And there's a lot of evidence now on the benefits of vitamin C on connective tissue. In vascular EDS, vitamin C is part of most people's protocol. I'd love to know more about why it helps me so much, but it does and I'm not messing with it.

[17:34] Dr. Linda Bluestein: 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 stressed. Thank you for sharing those extra details — that's really helpful. We're going to definitely link some of those HEDGE studies to the bendybodiespodcast.com website. Do you have other updates on either HEDGE, the DICE registry, or other major society-led initiatives?

[18:12] Lara Bloom: There's a lot going on right now. I would definitely encourage people to check out our website for the HEDS and HSD criteria study updates, the HEDGE page — all of our updates on those research initiatives are on there. As I said, the biggest finding that came out of the HEDGE study is that they couldn't replicate the KLK15 finding that the Norris Lab found. There was nothing with the THR genes. And there was another one they couldn't replicate that had been looked into — the Tenascin gene as well. So it was more telling us what we don't know than what we do know. But it also showed that there are more things to keep looking at. And the immune dysregulation work that's coming out is attracting a lot more research funding, so I'm hopeful that's going to yield some really exciting results.
[19:23] The DICE registry — we have, counting some legacy registries from when we were on a couple of other platforms, over 20,000 people now on the DICE registry, which is unbelievable. The largest collection of people with EDS and HSD ever. We've got our first couple of hundred people enrolled on the biobank, and the aim is to have 1,000 people by the end of next year. So that's going to be even more samples that people can use and study.
[19:56] I think the biggest bulk of work we're focused on right now is the Road to 2026, and that's really taking up all of our time and energy and focus. Things that are happening in parallel to that may come out before the publication and may impact it or may not. You just have to go with what you know right now. All of the committee and the consortium are working on everything related to that at the moment. So almost a year and 2 weeks left until that comes out.

[20:28] Dr. Linda Bluestein: And speaking of the Road to 2026, I know that so many people are looking forward to it but also kind of nervous about it. It's going to be producing this updated classification, diagnostic pathways, et cetera. What do you think are the biggest scientific and logistical obstacles to achieving those goals? What should patients be aware of, and what can we say to maybe alleviate some of their concerns? Because I know when people hear about this, they often get really anxious.

[21:06] Lara Bloom: Obviously I can't say too much — everything is embargoed until the publication. That is not the Society's decision; that's how publications work. But what I can say is that when the 2017 criteria came out, there hadn't been one for two decades, and everyone knew that change was needed. There wasn't a level of funding capacity or collaborative effort that enabled us to know more than what came out in 2017. 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 we had to do that to have some breakthroughs and make some headway.
[21:54] But I think over the years, what has come out of it is that there's a lot of grey. People aren't clear — what is HEDS? What's HSD? Is there a difference? And the HEDS and HSD criteria study recently announced at the symposium that the initial results we can share indicate that it looks like HEDS and HSD are one and the same spectrum, one and the same condition. Now, what does that mean? What will it be called? How will it be classified? Will comorbidities be involved? All of these questions are what is being worked on now. So now we know it's one and the same thing. Now we know there's not a single gene causing it. All these things are being drawn from all these parallel studies.
[22:41] And I say "we" — it's the Society that has funded and facilitated this work. There are 3 or 4 of us from the Society who have a seat around the table, bringing our lived experience expertise and bringing all of the data 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. We don't have a vote. We don't vote on the outcomes; that is left to the independent experts around the table. We don't decide what things are called or how things are classified. Our role is to say, this sucks right now and it needs to be better. These are the issues, and these are what people are facing in Sweden, in America, in Africa. This is the reality on the ground. We are 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 odysseys, the time to diagnosis, and getting closer to models of care and diagnostic realities where, when you are diagnosed, you have management and care? That's not the reality right now in most of the world.
[23:55] So it can only get better. But sometimes to get better, there has to be change. What I can say is change is coming. And we all have to hold on tight, because I don't know exactly what that change looks like now — the work is still ongoing. But I do know that change is coming. And as someone who lives with this and is diagnosed with hypermobile EDS, I'm going to be impacted too by whatever that change will be. So as a patient, I also have anxieties about what that means. As the CEO of the organization that's going to get the community through these changes, I have immense anxiety and concerns.
[24:40] But what I do know, and what I believe in strongly, is that this change is needed, it's necessary, it's important. And although it might be difficult in the beginning to navigate — because change always is difficult — I think it's what's needed to take us all to the next stage. 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. You know, we could have found a single gene marker for hypermobile EDS and it would still be change, and it would still need navigating. So I'm not necessarily preparing people for anything bad. It's just that whenever there's change, you have to think about ICD-10 codes, ICD-11 codes, insurance implications, access, primary care diagnostic pathways, the European reference networks, every other national organization out there. There's so much to consider.
[25:51] But I am optimistic and I am hopeful. I do believe that change is needed. Our role is, like I said, to bring the voice of the community to the table and then to take the science and try and communicate it and embed it in the best way — for the first time ever, I believe. We have the people and the tools for the first time ever to actually have a serious attempt at systemically changing the reality of access and diagnosis with these conditions. So I'm excited. I'm already tired for next year. I'm exhausted for 2027. But we just keep going. And if I thought this year was busy, it ain't nothing compared to next year.

[26:41] Dr. Linda Bluestein: Wow. That's crazy.

[26:44] Lara Bloom: It's good. I'm ready for it and I'm excited.

[26:47] Dr. Linda Bluestein: And that fits in perfectly with what you said last time about the first 10 years laying the foundation, and now you're able to do such incredible things. And you're still in your garden office, right? I think I heard a little ambulance go by or something — I hope that person is okay.

[27:05] Lara Bloom: Yes. Still in the garden office.

[27:09] Dr. Linda Bluestein: That was so beautifully stated. And I shared something on the podcast about having a hypermobile EDS diagnosis and that my diagnosis might change as well. So I'm a patient too, just like you just said. A lot of people, after I talked about it on the podcast, were very upset. So I really appreciate you sharing a lot more about the process. 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. What we need is for things to be defined as well as they possibly can be, and then for individual people to be as accurately diagnosed as they can be so that they can get the help that they need.

[27:57] Lara Bloom: Exactly. And the reality is there isn't anywhere right now where having HEDS or HSD gives you access to what you need. There are issues with both, and there are issues culturally and geographically all over the world. In somewhere like Australia, for example, and some places in London, if you get to the right clinic, there's no issue with having a diagnosis of HSD. In other places in Europe, you're not going to get anything. And then there are other places where they won't even use the term HEDS — they believe it's overmedicalizing and overdiagnosing.
[28:33] I think the reality is, whatever it's called — whatever it's been called — a diagnosis matters. It gives you validation and it gives you an understanding of what you are living with. So whatever it's going to be called, the actual words are somewhat irrelevant. Our job, as the Society, is to make sure that whatever that diagnosis means, it means credibility, validation, access to diagnosis, and access to care. Right now, neither HEDS nor HSD necessarily give you that. Whatever the change will be — and it's not likely to be anything entirely new or either of the existing terms — I don't know exactly how it's going to land. What I'm trying to say is, it can't get worse than how it is right now. People need to accept that we have to move forward. All of these studies happening right now are going to inform those decisions.
[29:30] And critically — again, our role in this is to say to the scientists: in your opinion it might not be important what it's called, but the reality is it is important. However it's termed, classified, and described needs to be an accurate representation of what people are living and experiencing every day. That's where I come in. That's where the organization comes in — the people we've got around the table — saying that the detail underneath the scientific decisions is where we can play a role. I think it's important. I think diagnosis means a lot to people, and I completely respect and understand that, as someone who waited 13 years for mine.

[30:17] Dr. Linda Bluestein: Yeah, that was a pivotal point for me as well — getting the diagnosis — because suddenly everything makes sense. And it probably was papers of yours that I was first reading when I didn't know what was going on with me. I started, just like a lot of people, reading different things and going, wait a minute. I was a physician, I was working as an anesthesiologist. I had learned about Ehlers-Danlos in medical school, a couple sentences like most people say. So it's pivotal when you actually have a name to put to what you're feeling in your body.
[30:51] I want to talk about the 2025 Community Experience Survey. On the website, it wasn't clear to me if it's still open or not. Do you have something you can share about that? And also, why do you think it's important for people to register on DICE?

[31:06] Lara Bloom: So it's not open anymore. 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 is one of the standalone papers in the publication next December. So the community experiences 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 these conditions mean.

[31:42] Dr. Linda Bluestein: Excellent. Okay, we are back, and 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 Dr. Claire Francomano, right? — and I was like, oh my gosh, this is going to be huge, and this is probably going to upset a lot of people. I was at that 2017 conference in Las Vegas and it was quite interesting. But it's so exciting to see how the research has been growing and all the incredible projects that the Society is involved with on various different levels. How does the Society decide and prioritize which projects to advance?

[34:15] Lara Bloom: It's really based on funding, on the kind of funding we have. We have something called a Research Inner Circle where we encourage researchers and academics to submit proposals. And then we have a pool of high net worth donors who look at those proposals and decide what they want to fund. As an organization with no government funding and no industry funding, we are reliant on individual giving. Where we get research funding that's unrestricted, we will do an RFA — a request for applications — and then it's much broader. We have an independent scientific committee that decides what gets funded. Any proposal that comes through the Inner Circle is vetted by our chief scientific and medical officer. Our medical and scientific board monitor all the outcomes and the reporting. So there's a lot of good governance around it, but ultimately we are at the mercy of having only that type of funding available to us.
[35:27] There is an element right now where there's a huge influx of research going into HEDS and HSD, because the donors we have have children with that condition and they are emotionally invested in trying to make their children better. That meets our mission and matches our research priorities, so we are happy to do it. 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 types, because currently we don't have any high net worth donors giving in that area. In an ideal world, we would be giving equally to all the types of EDS. If there are any high net worth donors out there who are emotionally invested in those other types, please reach out — we are here with our governance structure set up, ready to give out that research funding.
[36:27] Listen, we've funded $40 to $45 million in the last 5 years in research. I mean, we've done amazing things. When you think that that's just from parents, it's extraordinary. I'm really proud of us, especially since when we launched this, the most we received in one year was £25,000 for research. We've come a long, long way, and we have made possible pretty much all of the discovery that has happened in the past few years. In some way we have been behind that, and that's really exciting and something we are really proud of.

[37:01] Dr. Linda Bluestein: As you should be. That's tremendous progress in such a short period of time. And we know that more patients are getting diagnosed earlier, so long-term outcome data would be something really, really helpful to have. Do you know if there are plans for natural history studies or expanded longitudinal registries to track trajectories, complications, et cetera, over decades even?

[37:26] Lara Bloom: Yeah, so we launched a natural history study at the end of last year. It's initially looking retrospectively at data from Dr. Claire Francomano's clinic at GBMC and at IU. We have intentionally paused the prospective collection of data until the new criteria is published, so that it all then matches the right terminology and incorporates all the changes. It seemed redundant to collect data for a year and then have all the data points changed — because obviously it's all going to be done through the registry. So please watch out for that at the beginning of 2027. That's one of the first things we'll be launching: pushing the surveys to join that natural history study. We don't know enough, so we are really excited for that data.
[38:10] The other big study that will be launched as soon as we can after the publication is a prevalence study, because no one has a clue how many people are actually living with this. I think it's safe to say now that we globally agree that HEDS and HSD is not rare. But how common is it, and how rare are the rarer types? We just can't answer it. The only published figure is 1 in 5,000. There have been other attempts at getting a number, but they haven't been done right. They concluded "EDS is not rare," which is ridiculous because all of the types bar one are rare. We have to be very careful what we say when we say EDS isn't rare. Hypermobile EDS isn't rare. All the other types are rare and ultra-rare. So some really reliable, well-done prevalence studies are going to be our priority in 2027.

[39:05] Dr. Linda Bluestein: And speaking of the 2026 guidelines, do they include sex and gender-specific considerations — hormonal influences, differences in symptom presentation, documented healthcare biases? We know there are differences in access to care. Do you know anything about that? I know there's only so much you can say. Is there anything you can share about underrepresented populations?

[39:33] Lara Bloom: We will be announcing something soon that I can't talk about at the moment, which is going to be looking specifically at models of care. And that body of work is really going to be where those issues are tackled. In terms of the actual publication, I can't go into the details of what will come out. They're being written as we speak — and some of them haven't even started, because they're still building the evidence and doing literature reviews. But I know that Dr. Claire Francomano is doing a hormone study that will be very interesting when the results come out.

[40:10] 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. What do you think the key message was that you brought to this global stage, and what is the real-world change you most anticipate?

[40:34] Lara Bloom: I don't anticipate the change immediately. I've been attending the WHO for a good 3 to 4 years now, and each year it gets a little bit more EDS being part of the conversation. But it's largely been through me being on a panel at other people's events versus the topic being EDS. However, because of attending all these events and because of the networking and collaborations that have happened, in May 2027, EDS will be hosting our very own event at the WHO — all about the new diagnostic criteria and models of care. And that will be part of the announcement we make soon about the models of care work. So watch this space. Incredibly exciting. I think in the next 2 to 5 years, that's when we'll start to see that change ripple out and the domino effect of being able to have a seat at that table.

[41:33] Dr. Linda Bluestein: What do you suggest for clinicians who are just learning a little bit about these conditions and maybe feel like they don't have enough tools in their toolbox and want to help patients? I want you to talk a little bit about the ECHO program, of course, but what are some different levels of ways that they can learn more so that they can actually make a difference in their patients' lives? Because this whole "there's nothing you can do" message that we keep trying to debunk is something I still see over and over and over again.

[42:05] Lara Bloom: I think the first thing I'd say is don't be scared of us. There is no such thing as an EDS specialist. All it requires is someone who's willing to listen and learn if they haven't come across the condition before. But it's multisystemic. The ideal place for this to start is primary care. And I would encourage, with any disease — there is not enough listening that happens in the clinical pathway. If people listened to and validated what the people in front of them were experiencing, I think we'd see much less time spent in that diagnostic odyssey.
[42:52] Understanding that a female can walk into a doctor's office with a racing heart, GI pain, and a bad knee, and it's not anxiety — and to not see each issue as an individual presentation but to put everything together and think about what could be causing all of it. And sometimes there isn't a unifying cause, but as we know with EDS and HSD, there often is. Equally, what can be just as dangerous is when you do have a diagnosis and then issues that come up are all put down to your EDS and HSD. Some really significant health issues can be missed because it's like, "oh, it's just because of your chronic health condition." So there's a balance there in how people need to be tuned into that.
[43:48] I think it comes back to advocating for yourself. I wish we didn't live in a world where people were so threatened by educated patients, but we do. Doctors don't like it. And I would urge them to see that — instead of a threat and something to be frustrated by — to see someone in front of them who has clearly been working through a lot of challenges and barriers to get the care and answers they need, and that this is a person who really needs you to sit and listen to what they're saying. If we introduce listening as the first point of care, we'd all be a lot better.

[44:26] Dr. Linda Bluestein: That's so well said. Fantastic advice for clinicians. Do you have advice for patients who are trying to get their clinician to listen?

[44:35] Lara Bloom: I always recommend going in with a list. As much as that list can be overwhelming and threatening to a doctor, what always happens is you get into the room and you forget everything. To try and — 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 this myriad of symptoms you are experiencing is logged somewhere.
[44:59] I also think it's important to say, "I've been looking at this, what do you think? Do you think this could be something?" rather than almost not caring about their opinion. I've found that I've had much better reception from people when I've taken that approach. I think it's a really hard time to be a patient, more than ever. I wish I could give more hope and pockets of wisdom for people, but it's tough. Try not to rely on Dr. AI and Dr. Google. Try and understand your rights — you can keep requesting to see another doctor, a new person, because you have that right. And look online about self-advocacy and what to do in those situations. There is support out there to help you through that difficult process.

[46:09] Dr. Linda Bluestein: I think another thing I try to stress with my patients who are seeing other clinicians and come back and report negative experiences — and it's obviously harder to do than it is to say — is trying not to take it personally. I even went to a doctor's appointment with a member who does not have EDS and had a very straightforward problem. Even they got gaslit. The orthopedic surgeon looked at the images and was like, "it's not that bad," and then looked at the images of his own knee and literally said, "my knee is worse." And this was a white male, so they had more things going for them statistically, and yet that still happens. So if we can try not to take it personally and also try not to gaslight ourselves — because I know that before, when I was really frustrated and in so much pain trying to navigate all these symptoms, I would give the doctor too much power over me. If they were not believing me, I would stop believing myself. Believing in ourselves and knowing that we're feeling what we're feeling is really important.

[47:36] Lara Bloom: I agree.

[47:37] Dr. Linda Bluestein: And speaking of advocacy, one of the listeners asked me to ask you how other people can get involved in EDS advocacy.

[47:47] Lara Bloom: There are a few different ways. On our website there's a "get involved" button, and there's the ECHO advocacy course that's happening at the moment. There are also other ways to volunteer, share your story at our events online, and there are ways to do professional advocacy as well. I believe that information is on our website. It's never been a better time to be an advocate and want to try and professionalize that.
[48:19] Everyone always says, how can I do what you're doing? I am an advocate, but I'm a CEO primarily — I run the organization, and my advocacy is still to a certain extent something I do on the side, because it's very difficult to get a paid job where you can advocate full-time. I've been in this field now 15 years. I started as a volunteer, as an advocate, as someone who just needed something that wasn't there, so I tried to build it. And I think you have to move from just telling your story to being the voice of many, and that is quite difficult to do. I very rarely talk about me anymore. Sometimes I forget I have the condition because I'm so busy talking about other people's experiences. People say, how did you get into this? And I'm like, oh — and I have it. But it's not what I lead with. That's the difference of professionalizing it into a job. It's no longer just your narrative and story; it's advocating for many. There are options for both, and neither is more important than the other. They're just different options for how you want to advocate.

[49:41] Dr. Linda Bluestein: We know that so many people with EDS and HSD live with significant financial strain. Can you highlight the Society's free or low-cost educational resources so that people know how they can utilize them?

[49:55] Lara Bloom: Sure. All of our information on our website is free. We have a YouTube channel as well. We have webinars, videos, and translated content. We have a lot of events, and they are paid for because it costs a fortune to put on events. But we have scholarships for every single one of our events, and we also then have the content available online for free a period of time after. So check out our website, check out whatever area of the body you are interested in. We also have something called Claire's Corner, which is Dr. Claire Francomano doing loads of educational videos about learning and understanding more about the condition and the comorbidities.

[50:38] Dr. Linda Bluestein: Can you also talk about the provider directory? When I asked listeners for questions to ask you, one person responded that they were frustrated with the provider directory because they must have come across somebody who, at least in their opinion, did not have much expertise on EDS and HSD. Can you explain a little bit about how that directory works?

[51:03] Lara Bloom: Sure. We cannot manage and vet 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's just not our role as a nonprofit organization to be the people who determine people's experiences at these clinics, because someone might have a fantastic experience while others may not. We also don't add people to the directory — people have to add themselves. We have a disclaimer on there for that reason, because we cannot give absolute conviction of the clinics and the services they provide. So you have to use it with that knowledge and then do the research that one does when deciding whether to see a healthcare practitioner.

[52:02] Dr. Linda Bluestein: Are there any other thoughts about the Road to 2026, the updated criteria, and people who fall in the grey zone? How will the Society communicate changes in a way that respects people's lived experiences and prevents fears over losing diagnoses? And are there going to be any pathways for patient feedback or community input? What if the new criteria fails to reflect certain phenotypes?

[52:30] Lara Bloom: Everything we are doing is trying to represent the voice of lived experience and to make things better. That is the primary goal of this entire effort — to make things better. It's in no one's interest to create something that is going to make it harder for people to get diagnosed. We are going to be doing a lot of work providing resources, toolkits, webinars, and events to communicate this information for people to understand what that means for them. We're also working on various other things I alluded to that are going to be announced over the next year — partners we're working with, efforts we're making to really make this land well.
[53:19] We are also holding something called listening labs across 2027 — one a quarter in every region — where we are inviting people to tell us the reality of what this diagnostic criteria change has meant. An effort to have real-time feedback. And these things are never final forever. It's been almost a decade since the 2017 criteria. But if we start hearing on the ground that X or Y just is not working, or there's a new challenge that hadn't been thought of, there are things that as an organization we can then lobby and advocate for that can improve those things. Rather than change the science — because that's the point, we can't change the science — we will try to change what that science means and how we can make it accessible. Yes, we're going to be listening and learning with the community from day one of those new changes.

[54:31] Dr. Linda Bluestein: You already talked about how wonderful it would be if people could fund research on the rare types. If funding was unlimited, what moonshot initiative would you launch to transform EDS and HSD care worldwide?

[54:46] Lara Bloom: Oh goodness. I think it's all got to be about the therapeutics. There are no therapeutics at all out there. I'd love to look at — and we are starting to look at — drug repurposing and gene therapies. I think gene therapy would be the ideal moonshot for the monogenic types, because we know what is causing those conditions. But therapeutics for symptom management is really where I'd like to go. We've got so many things that are going to be announced over the next year or two that I really hope will start having more of an impact in real time for people. Because I understand that all this research, as incredible as it is, people aren't necessarily immediately feeling the results of it — we don't yet have a marker, for example. So we're working on what we can do to try and get things to people more immediately.

[55:45] Dr. Linda Bluestein: And that's a big reason why I started this podcast. I would go to meetings — in particular the ASA when I was still working as an anesthesiologist, the American Society of Anesthesiology meetings — and sit there and listen to researchers sharing fantastic work, but recognize that in clinical practice this wasn't getting translated, and there were such long delays. So it's great to be able to talk to people like you and get that information available to thousands and thousands of people who wouldn't otherwise get to hear it. Thank you. That's really helpful. And what does success look like in 5 or 10 years for the Society, for patients, and for future generations?

[56:35] 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 6 weeks, as is often the case right now. Care for life, the right care, and that validation.

[56:53] Dr. Linda Bluestein: Was there something that you were hoping I was going to ask that I did not ask you?

[56:58] Lara Bloom: No, I don't think so. 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. But I am 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. And that this condition will actually be one that's respected, credible, and believed by people out there who just don't take it seriously right now. That change is already beginning, but I would love to get to a point where nobody rolls their eyes when they hear about this condition. That would be a massive win.
[57:46] It's very hard when you go to places and people just don't get it. So lots of educating to do. But like I always say, the hardest part is the amount of re-educating we've got to do. I'm excited to have this new criteria and new classification, and all of the supporting work going around that — with the care pathways, models of care, and everything else — so 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. We've never had that before.

[58:22] Dr. Linda Bluestein: Yeah, the stigma is very, very real. I was speaking to the head of another nonprofit organization, and she said that in a different country they actually encourage patients who are going to potentially have surgery to maybe not get the diagnosis before the surgery, because the surgeon often doesn't want to see them. And it was like — that's so backwards. And it's very worrisome, because obviously as a surgeon, you should want to know what you're getting into. When I was working as an anesthesiologist, this happens so often in the middle of the night — 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.

[59:17] Lara Bloom: Exactly. It's very frustrating. And there are lots of things that need to improve.

[59:20] Dr. Linda Bluestein: And as you know, we end every episode with a hypermobility hack. Do you have a hack you can share with us?

[59:30] Lara Bloom: Goodness. I would say the one hack that's seen me through for now 12-plus years is movement. 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 I move daily. But that weight-based work makes a really huge difference for me. My life changed completely when I started focusing on building muscle and letting it support the job that my tissues weren't doing.
[1:00:06] And focusing really on what I'm eating — not thinking of it as a diet, but just really focusing on clean eating, avoiding ultra-processed food — that has really made a difference for me. But everyone is different and everyone needs to find what works for them.

[1:00:26] Dr. Linda Bluestein: That's so true for me as well. And like you said, it's giving your body the building blocks and finding those things that you can do to slowly start making improvements. That's what I tell my patients all the time. It's not like you're going to wake up tomorrow and feel 100% better. We're trying to make some slow, steady progress. It's not necessarily going to be linear, but hopefully we can get to a place where we're significantly better a year from now or 6 months from now. And that building of muscle mass is so huge. Well, I'm so grateful to have had this time with you, and thank you so very much for coming on the Bendy Bodies Podcast. Before we go, is there anything else you wanted to share, and can you let people know where they can find you?

[1:01:12] Lara Bloom: Yeah, absolutely. I would just like to say: join us in the next year. We are with you. We are partners with you. And we will do our very best to make this change, whatever it will be, as easy for our community as possible. You can follow us at Ehlers-Danlos. You can follow me at Lara.Bloom — type my name into most things and you'll find me. Our website is ehlers-danlos.com and yeah, very happy to chat with anyone, answer any questions — reach out to me on Instagram. I don't really go onto Facebook much anymore. I'm not on TikTok, but I am on Instagram. Definitely not on X, but LinkedIn and Instagram are where you'll find me the easiest.

[1:02:04] 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.

[1:02:11] Lara Bloom: Thank you so much. I appreciate the opportunity to chat.

[1:03:10] Dr. Linda Bluestein: 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 are 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 unconnected symptoms — things like joint laxity, GI complaints — and they don't know how to connect the dots. So please share the podcast, because this really helps get information into the hands of people who can make a difference in the lives of patients.
[1:03:51] 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, 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 conditions.
[1:04:14] 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 services page at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn at hypermobilitymd. 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.
[1:04:52] 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 statement shared on Bendy Bodies should be considered medical advice. Please always consult a qualified healthcare provider for your care. To learn about the Bendy Bodies program disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to chat with any questions, please visit bendybodiespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.