Examining The Future of EDS Diagnosis and Care with EDS Society CEO Lara Bloom

[00:31] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. Today's guest is Lara Bloom, President and CEO of the Ehlers-Danlos Society. I first met Lara in 2017 when I attended the Ehlers-Danlos Society conference in Las Vegas. And it was so exciting to meet her. At that time, the 2017 diagnostic criteria for hypermobile EDS had just been released. So as you can imagine, that was a really exciting conference — a lot of really dynamic conversation. And I'm so excited to share with you her thoughts on the diagnostic criteria, the differences between hypermobile EDS and HSD, and also what's happening at the Society and what they are working on now.
Lara Bloom is President and CEO of the Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic, and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions. Lara leads Coordinated Medical Collaboration, raising funds for research, and focuses on global progression, education, and awareness.
[01:42] I want to let you know today she is joining us from her garden office, so you may hear birds chirping at one point or a plane flying overhead. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. Okay, let's get started. Let's talk to Lara Bloom, President and CEO of the Ehlers-Danlos Society. I'm so excited, Lara, to jump into these questions with you and would love to start out by hearing about yourself and your experiences advocating for rare diseases.

[02:19] Lara Bloom: Sure, absolutely. Well, it's a pleasure to be here, and I have been working in this space now, believe it or not — well, I don't believe it, you may believe it, but I don't believe that it's been almost 15 years, because it just feels like it's gone like that. I started with absolutely no intention to still be here all this time later. I thought it was going to be a very short-term thing, a volunteer role. I had a very different career aspiration in mind, and one thing led to another, and I took a different path, and here I am.
[02:51] And I think what I've enjoyed the most about my career thus far is the breadth of how many different areas I'm able to touch on. Of course, my expertise lies in the Ehlers-Danlos syndromes and hypermobility spectrum disorders, but I get to work in the space of rare diseases, of lived experience, of patient engagement, of lobbying and activism on a political level, which as a political student is wonderful and geeky for me. And I really enjoyed that aspect of it. And of course, now on a global stage since moving from EDS UK in 2015 to setting up the global organization, the Ehlers-Danlos Society, you get to take on the whole world, which is ever, ever the challenge, but one I really enjoy.

[03:42] Dr. Linda Bluestein: Wow, so next year it will be your 10-year anniversary?

[03:43] Lara Bloom: It will, yeah.

[03:47] Dr. Linda Bluestein: That's incredible. So of this roughly a decade, what are the things that you're most proud of or think are most significant that have happened over that time?

[03:59] Lara Bloom: I think certainly turning the vision, the global vision I had in 2015, into a reality and seeing that through and it becoming more successful than I ever dreamed — that is the thing I'm most proud of. And then from that stems so many other things.
[04:16] If we go back to 2015, I was still working for EDS UK. I was a member of the board of directors for EDNF, which was the U.S. organization at that point for EDS. And I was there as an international representative, and I could see from the work I was doing, from the conversations happening around their board table, that there was a need for this international overarching organization. The medical professionals out there wanted it, the researchers wanted it. There was a need for the national organizations. There was so much fragmentation. It was just not a positive place to be. There hadn't been revised diagnostic criteria for two decades, and people needed steering, and it needed to be from this kind of global umbrella perspective.
[04:59] And so in 2015, I remember very clearly, I got on a call with Shane, who was the executive director of EDNF, and I said, "If I would be willing to leave EDS UK, do you think EDNF would put up the funding for me to set up an international organization for a year?" And I was pretty confident that after that year, I would've generated enough funds to cover my salary. And he said, "Absolutely, this is what we've wanted, this is what we've needed. When can you start?" basically. And I wasn't expecting that. So I was like, "Oh, okay, wow, this is real." "This is a bit scary." And in July of that year, I left EDS UK, which was a big decision, because I was really enjoying things there. When I started, they were a tiny, tiny reactive organization. And by the time I left, we had an office and staff, and they were, after EDNF, one of the biggest charities in the world for EDS. So I just knew that to really make systemic change, it needed to be done globally.
[06:11] So that first year, I'm not gonna lie, it was really tough. We thought it would be this thing that everyone had said they wanted. We went around and literally shopped around to all of the doctors and all of the organizations and presented this idea, and everyone was like, "Yes, this is what we've wanted." So we were like, "Amazing, the funding's going to come rolling in." And it didn't. And we realized very quickly that we were going after the same donors and the same networks as EDNF was. And so we made a decision to shut down EDNF as the US organization and relaunch as the Ehlers-Danlos Society. That made things a little bit easier.
[06:51] And then in 2016, at the global learning conference at that time, we launched officially the Ehlers-Danlos Society with our new logo and new mission. And it was an exciting time. And even then it was still a slow burn. We were still waiting for the millions to start rolling in because that's what we needed. And obviously in parallel to that, all the work was going on for the 2017 diagnostic update. So that's where most of the energy was going in terms of facilitating that work.
[07:27] And it wasn't really until 2018 that things finally started moving in the right direction. I remember really clearly — such a vivid memory — standing on a rooftop in New York with Shane. We were there on a site visit for the 2016 symposium that happened for the criteria work. We were just looking out and it felt like this gigantic mountain of work that had to be done. And we weren't just at the bottom — we were like underground, it felt like. We just had so far to climb. And he looked at me and he said, "You know, I think this might work. I think this is gonna work." And I was like, "It needs to. There's so much need, there's so much we have to do."
[08:13] And here we are in 2024, we've raised $14.5 million in research. We launched the biggest and first genetic study for hypermobile EDS — whole genome sequencing 1,000 people from all over the world during a global pandemic. We've trailblazed in lots and lots of ways, and I'm really proud of us and the amount of people it takes. People often see my face everywhere, but my God, it takes a village. The doctors, the staff, the people that have put their time and energy into all of the things that have made this a success — building our biobank, our registry. We've got 17,000, 18,000 people now from around the world on our registry. We're funding research where there was never before a place for researchers to come and apply for funding in a consistent way. We're reaching thousands of people through hybrid events. We're translating material into lots of different languages. We're touching people in Peru and Panama and everywhere you can think of. It's just crazy and it's wonderful.
[09:20] But what still astounds me is that after all this time and after all these successes, I feel like we've only just come out from underground and we're now at the foot of the mountain. But I feel like we've got the gear, we've got the oxygen, we're ready to climb. And that's what I feel 2024 and beyond is all about — ascending that mountain and getting to the top.

[09:41] Dr. Linda Bluestein: Yeah, it's been quite a journey for sure, and I appreciate you sharing that incredible perspective. And I know that so much has been accomplished in this time period since you took over at what was then EDNF and now the Ehlers-Danlos Society. And it's just amazing how many more people are, of course, aware of what the Ehlers-Danlos syndromes are and hypermobility spectrum disorders. But we also know that there's still so much misunderstanding, and there's still misdiagnosis and things like that. Do you have thoughts as to why that's continuing to happen?

[10:12] Lara Bloom: You know, I think we still have decades of neglect to heal from. And there's one thing of educating people, and I think that's what we've done a really great job of — through EDS Echo, through our conferences, through our events, through new publications, the increase in publications. Now the tough job is: how do we re-educate people? Because there's nothing worse than a doctor who thinks they know what EDS is. And that's what we're battling with still. So it's the people that go, "Yeah, yeah, yeah, but it's overdiagnosed, it's over-medicalized, it's this, it's that."
[10:52] And it might be overdiagnosed. I think it's one of the conditions that is both over- and mis- and underdiagnosed. And how does that happen? Well, you've got such a long multi-systemic set of symptoms that when people are visiting forums and websites, they see these symptoms and they may be self-diagnosing because of the absence of being able to reach a medical professional. And so there's an element of that, but that's because of the lack of good healthcare out there and the ability to get to a doctor who understands what these things may be. Because whatever it ends up being in terms of a diagnosis, something is wrong — something needs managing and treating. And if that happens to be EDS, then it's EDS. It could be HSD, it could be chronic fatigue, it could be lupus, it could be all of these things.
[11:48] And so, okay, fine, some people may be self-diagnosing incorrectly, but let's get them diagnosed correctly then and focus on that. And I think that's what frustrates me so much. It's not people sitting there thinking, "What could I give myself as a condition here?" It's people that are genuinely struggling with very real symptoms that need to be managed.

[12:14] Dr. Linda Bluestein: Yeah, I think that's a big frustration that I have as well. A lot of my colleagues think that because when somebody comes in for an appointment and they're almost disappointed if their imaging and their lab tests come back normal or unremarkable, that the person wants to be sick. And it's like, no — they know that something is wrong. They know that they don't feel well and they're trying to get to the bottom of it. And so it's frustrating when there are no answers. And then when their clinicians don't have time to really investigate, or don't have the proper training — because we know that the Ehlers-Danlos syndromes, and especially hypermobile EDS, because we don't have a genetic marker for it yet, definitely requires training and time to make that diagnosis correctly. So yeah, I agree. I think it's overdiagnosed and underdiagnosed at the same time.

[13:07] Lara Bloom: Yeah. And it's not good enough whichever way you look at it. And I really believe that we are at a really transformative time, and that the work going on — the road to 2026, the next diagnostic publication, the next review of things — is gonna really set the scene based on a lot of research, multi-center, peer-reviewed research that's gonna get us to a state of affairs that people can really trust in and listen to. And that will be the start.
[13:42] I feel like 2017 was almost a placeholder of "this is the best we can do for now." It was more of a research criteria, and the consortium did the best they could. But now they are so much more equipped to really have a very compelling publication come out of this. We're gonna have the results from HEDGE and other studies that are going on looking at biomarkers. So we can say, is this more than a clinical diagnosis? Can people have tests for this? Is hEDS and HSD the same thing? And what does that mean if they are? What does it mean if they're not? What is EDS? What truly do we mean when we say what is EDS? And then once we've got all of that, we can start to say, okay, what's the prevalence of this thing? Is EDS rare? We know 13 of the 14 types are rare or ultra-rare. What about that one type? Is that prevalent? There are just 1,001 questions that are still unanswered.
[14:42] And that to me answers your question of why are people still struggling for that diagnosis, why are people still not believing it — because it's still so very gray out there. And my hope and my genuine thought is that 2026 onwards, we're gonna be able to have a lot more definitive outcomes and answers that will stop the naysayers and hush the noise out there and make it a much easier process for people to be believed, validated, diagnosed, managed, cared for, treated, and all of those things that should be happening now.

[15:16] Dr. Linda Bluestein: And the 2017 hypermobile EDS diagnostic criteria — even when they were first released, I remember it was you and Dr. Claire Francomano together who announced them. I remember that, because that was in March, and I had just written a paper about pain management with joint hypermobility. I remember watching that broadcast and immediately emailing the editor saying, "I need to rewrite the entire introduction because they just changed the diagnostic criteria, and this is too important to have something go out with old information."
[15:54] But when that criteria came out — and I remember the first conference I went to, the first time I met you, was in July in Las Vegas, the Ehlers-Danlos Society Global Conference — a lot of people were upset, right? Because they were afraid they were gonna lose their diagnosis, and probably some people did. And like you said, the consortium did the best that they could at that time. What are your thoughts, knowing now that there's the road to 2026 and this is being revisited — what are your thoughts on the 2017 criteria for hypermobile EDS?

[16:26] Lara Bloom: I think that they improved things despite what people think. And one thing that really frustrated the hell out of me, and that I still can't fathom, is how people personally blamed me for the publication — that they thought I actually decided what it would be. I mean, it's just so naive and ridiculous that I would have a say in that. I was part of the group facilitating all the doctors to come together, and I gave my lived experience of what I thought should be included. Some of it was taken on board, most of it wasn't, because ultimately they had to base it on their clinical experience and what we had at the time. And I wasn't the only patient voice in that process. We have a community voice in every group of the consortium. So that was incredibly frustrating on a personal level — that people were just like, "Lara Bloom decided the whole thing. It's based on her phenotype." It's almost an insult to science that that's what they thought.
[17:33] So my biggest hope for 2026 is people don't blame me for it. You can blame me for making sure it happened, because absolutely, I said at the time in 2017 that we are gonna do everything we can to make sure this is much more regularly looked at and assessed. And the things that have gone into it — the hEDS and HSD criteria review, the HEDGE study — although by the time this is published, which blows my mind, it will almost be a decade since the 2017 criteria. The work to get there began after 2 or 3 years. So we are committed to ensuring that we facilitate that regular review, and we're improving that all the time.
[18:18] I think it was more of a research criteria because without the 2017 criteria, we wouldn't have been able to do HEDGE. So it helped with that and it helped with other research studies. It helped a lot of people who were uncomfortable with diagnosing hypermobile EDS to get on board with HSD. But I think what we've learned from that is also that it was confusing — even for people who really know the conditions — to truly decipher what the difference is between the two.
[18:49] So do I think it was perfect? Absolutely not. Do I think it was as good as it could have been given where we were at that time? Yes. And I think that despite some people's personal anecdotal experiences, you just have to look at the data to see how much has improved since then. There are more people being diagnosed, there's more awareness, there are more published articles, there are more researchers, there are more doctors, there are more people wanting to be part of ECHO than ever before. So whatever it did, it opened up the space and it definitely moved things along in the right direction.
[19:30] I'm delighted it's being reviewed. I'm delighted it's being worked on in the way that it's being worked on, with the other studies bolstering what will come out. There's a phenomenal group of people critically looking at every single aspect of what comes out. And most importantly, as the Society, our role is to then be the bridge between the science and the community. How do we communicate what comes out? Let's say hypothetically — and this isn't ever going to happen — but hypothetically, a gene is found for hypermobile EDS and everyone with hypermobile EDS has it. We then have to think, okay, that's great, but what about people all over the world that can't access a geneticist or genetic testing? How do you make that work globally?
[20:27] So even the positive things that could come out of this are challenges. We need to make it equitable, we need to make it accessible, we need to think about language translations and plain language summaries. We need to take what's there and say, what's the reality of this for you?
[20:47] And in 2017, we probably didn't do as well as we should have, because we were so much smaller. There were 3 or 4 of us on staff at that point. We had no idea what was gonna come back, so we didn't plan in the way that we're planning now for all the eventualities and the communications. We're reaching millions of people now every year through our platforms and our website. At that time, it was so much smaller — 2 or 3 of us, 24 hours a day on social media trying to reply to everyone. We now have an entire comms team. So it's a different time, we're in a different place. But I think without 2017, we wouldn't be here now.

[21:33] Dr. Linda Bluestein: Mm-hmm. And I think the titling of the next criteria process — the road to 2026 — is so good because I think it really does help people understand that it is a process. People get frustrated and ask, "Why hasn't it been updated yet?" And I'm on the Allergy and Immunology Subcommittee, and we're talking about this a lot and already working on it. But people who are not doing that don't realize how much time, how much conversation, how much literature search and research goes into these things. So I think that's a really important thing for everyone to be aware of.
[22:14] And another thing — I don't want to say controversial, but the Beighton score as a tool for generalized joint hypermobility — everything in medicine has limitations, and I'd love to know your thoughts on it.

[22:35] Lara Bloom: Yeah, it's not what it should be. It's a very old tool that's been around, and it's one of those things where you just keep using it. I'm glad to say that, as part of the criteria study, the Beighton score is being reviewed and assessed — should more joints be added, should it be done a different way? We've also got other tools that have come along, like the SPIDER chart that has been recently published. How can we use these tools better, and how should we ensure that they are used appropriately?
[24:38] And all of that is what I mean by this being a much more robust process. The scope of how much is being looked at — I mean, we're going right back to basics of "what is EDS?" That's how fundamental it is. And the whole thing is being done through a Delphi process. For those who don't know what that is, I recommend you go and look it up — it's a great, rigorous research tool and process. It makes things so robust in terms of the diversity of people taking part and the range of expertise involved. And that wasn't done in 2017. So what I'm proud of is: was 2017 perfect? No. But have we learned our lessons from it? Yes. And are we making changes? Yes. And that's only a positive thing.

[24:38] Dr. Linda Bluestein: And we've already talked about some of the barriers to getting a diagnosis. Are there other barriers? And what do you suggest for people who are really wanting to get a diagnosis? The Ehlers-Danlos Society, as you said, reaches people in every country in the world, and there are a lot of listeners of this podcast in many, many different countries with various economic concerns. So what do you recommend for people who are struggling with that?

[24:38] Lara Bloom: I think we have to be very real. It's 2024, and despite all of the progression and all of the money that has been donated, we still live in a time where race, gender, sexuality, geography, and wealth determine your quality of life. And that, unfortunately, is fact. Are people like the Society and many others out there trying to change that and move that dial? Yes.
[25:03] Things like EDS Echo — trying to move knowledge, not patients — trying to help and assist doctors in local areas to be able to care for people living where they are, instead of having to wait 3 years to see the experts out there who have such long lists. We need to increase medical education. We need to get students learning about these conditions. And a lot of that work has been a little bit put on hold, because there is no point in us doing that — it's a huge amount of money and effort — when everything's going to change in a couple of years. So we're in a bit of a holding pattern right now.
[25:44] And I say that, but let's be clear — there's still a tremendous amount going on. All the biomarker studies, the biobank being built up, the registry being enrolled on. There's so much going on. But in terms of actually educating and disseminating information, we're in a bit of a holding pattern. And I think post-2026 — so in reality 2027, by the time it's published and out there — we will be going to all of the conferences, holding talks in as many places as we can. The consortium, we will have funding to offer speakers to go out there, spread the word, educate, disseminate, get people aware. We're going to have so many tools to use. We're going to have our app. We're going to make it so accessible.
And if, say, we've got diagnostic tests at that point, we're going to have ways to then say to people in Africa or Asia, "This is how you might be able to access that. Can we partner with labs that might offer reduced testing?" All of those things are for the future and absolutely need to happen to get to a place of accessible, equitable care.
[26:58] Right now, I feel like we're horizon-scanning that, and it feels like a long way off. But I'm so energized and excited by 2026 onwards because I feel like we'll finally — that's what I mean by the tools, the oxygen, the gear. It's like we're all at the bottom of the mountain going, "You ready? You ready?" And we're packing our bags and we're ready for this hike. That's what the Road to 2026, HEDGE — all of these things — represent. And it's like, boom, let's go, let's climb.
[27:24] And to think that by that point, after so many years, we're just almost then moving forward instead of healing the wounds of the past. You could look at that as really depressing or really exciting. And I choose to be a glass-half-full kind of gal, so I'm excited. But I understand how frustrating it is for people out there to be patient and to wait, when we've all waited so long to get the quality of life we deserve.

[28:01] Dr. Linda Bluestein: And, you know, I think it varies probably by person, but an official diagnosis is of course something that for a lot of people is really, really important. And I think you explained that so well — what's happening now and in terms of priorities of the Society. For a person who is just first learning about these conditions, how important do you think an official diagnosis is?

[28:29] Lara Bloom: I wish it wasn't important, because the reality is people should just get their symptoms managed and treated. But let's be real. There's healthcare, there's insurance, there's support systems from government and benefits — all of which rely on a diagnosis. And so it's naive to say it doesn't matter about diagnosis, just get your symptoms managed, when to get those symptoms managed you need a diagnosis. So unfortunately it's needed.
[28:56] It's also needed, I think, psychologically — giving you that validation and that answer to the question that some people have been asking for decades. It's a long road, and most people with EDS have had a really long diagnostic odyssey. So I think it's fair that at the end of that road, they want to have an answer, something tangible to be able to say, "Okay, it's this."
[29:24] So I do think it's important. But I think it should be an equal battle alongside trying to manage your symptoms. If you're struggling to get a diagnosis right now, can you speak to your primary care doctor or another doctor about how to at least manage your symptoms in the meantime? I'm aware of the barriers there as well, but people really do have to keep self-advocating. And we've got lots of resources on our website to support that. But again, I'm gonna be real with you — people are struggling for a diagnosis. Less than certainly when I came into this field, but it's still absolutely very far from where it needs to be.

[30:05] Dr. Linda Bluestein: Yeah, I totally agree. We are going to take a quick break, and when we come back, we are going to get Lara's take on a super important question: the differences between HSD and hEDS. Is there a difference, and is HSD less significant than hEDS or hypermobile EDS? We'll be right back.
[30:54] And we're back. And of course, we know that the 2017 criteria were so important, as Lara has already explained. This was such a critical piece of trying to solve this incredibly complex puzzle for people who are having these multi-systemic symptoms. And I was also one of those people desperately struggling to get help and a diagnosis and understand what was happening with my body.
[31:25] At the same time, we know that not everyone meets the 2017 diagnostic criteria for hypermobile EDS — including some people who already would have had a diagnosis. And we say over and over again that HSD can be just as serious, and in some cases even more so. But there's a lot of confusion still. Are these separate conditions, or are they actually the same condition? And is HSD less serious than hypermobile EDS? I would love to get your take on all of that.

[31:55] Lara Bloom: So the easy question to answer is: is HSD less serious than hypermobile EDS? Absolutely not. There is no severity comparison at all. You can have people who have hypermobile EDS and are athletes and CEOs and astronauts and everything else, and you can have people with HSD who are unable to get out of bed and are using wheelchairs. So it's really not something to compare in terms of severity.
[32:30] And HSD was penned with the best of intentions by the doctors who — you know, it goes back to your first question of why a diagnosis is so important. It was because they understood the importance of a diagnosis, and where there was the acknowledgment that with this new criteria there would be people who didn't meet it, they still wanted them to have a diagnosis and to have their symptoms managed. So it was done with the best of intentions. And I think again it just wasn't thought through as well as it could have been in terms of how it then landed. It wasn't workshopped out there, it wasn't scoped out other than at the symposium just a few months before and within the consortium group.
[33:17] I think again we learned from that — okay, this is great conceptually, it answers this question, it answers that question, but what's the reality of how it's going to land? And the fact that there are doctors in our EDS world who still can't definitively answer the difference between the two, and some think it's the same thing — that tells you something.
[33:36] So do I think it's the same thing? I'm going to not answer that question, because it's being worked on and it doesn't matter what I think — it's not going to influence the outcome. I am waiting for the group and the hEDS and HSD criteria study, of which the only involvement I had was to secure the funding to make sure it happened. It's been a multi-site endeavor, and I don't even know the outcomes so far. We will learn as we go as to what that study told us.
[34:12] I have the privilege of being in the room when conversations are happening for the Road to 2026, so I am going to start hearing these conversations. It's very embryonic — as you know, we've only just tasked the consortium groups with what's being done, and we're still tackling the "what is EDS" question. Things are still at the beginning stages, and the big questions surrounding hEDS and HSD are going to be tackled in Q1 and Q2 of next year. That's when that meaty piece will be discussed and then presented at the 2025 Toronto International Symposium, where a workshop on it will take place.
[34:44] And it will all be going through the Delphi process, so it's going to be looked at in the way it needs to be, with the number of people it needs to be, internationally, across all different levels, with community people involved as well. It's going to be done the way it needs to be done.
[35:12] So all I want to come out of this is clarity — for the community impacted by these conditions and for the healthcare professionals treating them. Whatever that means, I will get behind. But right now, there isn't clarity. So there needs to be a change. What that change is, I honestly don't know. But I know a change is needed.

[35:46] Dr. Linda Bluestein: And people are probably listening to this and thinking, "Oh my gosh, I didn't realize how much was involved." Hopefully they're thinking, "I didn't realize how much time people are spending on all of these different processes." So at the Society, when you add together all of the different consortia — and most of those people, of course, are volunteers — there's still a relatively small staff at the Society, I believe. But how many people are we talking about when you add all of the consortia together? And can you explain a little bit about how that process works? I think it's so important for people to understand all the background work that's going on.

[36:43] Lara Bloom: Absolutely. So we launched the International Consortium for EDS and HSD in 2016 for this work. And it was thought at the time that it was just going to be for that project. At that time, I think we had 90 members — really the main names in this field. And it was divided amongst the comorbidities. So we had the obvious — the GI, the neurology, the pain group, fatigue. We've now grown in the number of groups we've got. We've now got things like haematology, pulmonology, ENT — so many different diverse groups reflecting the multi-systemic ways that this can present.
[37:31] In each group we've got healthcare professionals on the whole, but we've also got community voice. And then we've got the groups for the types of EDS. And I think we're at close to 200 people now — so we've at least doubled, which is phenomenal. And 100% of those people are volunteers. We do not pay any consortium members, which is just phenomenal. In all that time — nearly a decade — these people have been tirelessly working to progress things in their spare time. We've got people on Zoom calls at 2 o'clock in the morning their time from Japan, Australia. It's just heartwarming, honestly. We are so lucky to have the amount of people in the healthcare arena who are committed to improving things for us.
[38:21] People apply to join those groups, and when there's a space for the community voice, they apply for that too. It's up to the chair of each group and their members to decide who gets in. So we, as a Society, just facilitate it. We don't control what comes out of the groups. We steer in terms of the need, but we don't say, "We need this to say this" — it's more, "This is the need; please work together collaboratively to see what that looks like." And it's been wonderful. There have been lots of collaborative publications. It's kind of broken down the silos that were there previously. Everyone is working collaboratively, and it's what's moved the needle.
[39:16] When we started in 2016, it was me and Shane, and Shane was part-time. Shane's now left — a long time ago — but there are now almost 40 of us, so it's actually not that small. That growth has really happened since 2018, 2019. Our engagement just in May alone touched 6 to 7 million people, so you can imagine the amount of online work it takes for all the messaging and the comments. And we're stewarding $14 million worth of donations to progress research. We're doing RFAs. Our research and registry team is now really big.
[40:16] It was really interesting when we announced that $14 million donated to date — $10 million of it last year — we saw a decline in our research donations. And I think there was a mentality of, "Oh, they're good." What people don't realize is that every single dollar of that is restricted. So it was X amount to build the biobank, X amount for Professor Aziz's study, X amount for this. And we see 10% of that, which is actually a very low overhead. And 10% of a million is only $100,000. That really doesn't touch the sides when you're running an organization with nearly 40 staff from all over the world.
[40:57] We've never had an office, we've never had bricks and mortar — we want the funding to go into the mission instead. So we really do keep our costs down as much as possible. But it was interesting: you shout about the successes, and then the "keeping the lights on" money goes down. People really don't comprehend what it takes to get to that point and to continue it. It's a lot.

[41:24] Dr. Linda Bluestein: Yeah, that's important information for people to hear for sure. And one of the other things that is on the Society website is the Healthcare Professionals Directory. And I think there's some misunderstanding potentially about what that involves. I know when I put the question out on social media — "What would you like to know from Lara?" — I did have some people say, "Ask about the Healthcare Professionals Directory" and "How do I add my doctor?" Can you explain a little bit about how the directory works?

[41:57] Lara Bloom: Yeah, it's a great question, and a timely one, because it's all about to change. Up to this point, because of capacity, all we were able to do was allow people to add themselves, and we had very little involvement in that. We didn't have the capacity to proactively add people. But if you go onto our website right now, you will see that we are actively recruiting for an outreach coordinator, and the primary role of that person is to proactively manage the healthcare professionals directory — to contact everyone on there, check that their details are correct, check what their waiting times are like, check that they're still active. But also to work with the community and say, "Send us the details of the doctors you'd like to add," and for us to then go out and try to get them added. Because it's not reflective of what's out there right now. It's not really fit for purpose in the way that we want it to be.
[42:55] What's really nice is we've just received a donation to be able to take that person on, and it's all going to get better. So watch this space. And if you feel like you could do that role, go check it out and apply.

[43:09] Dr. Linda Bluestein: That's fantastic, because I think it would be so much more valuable for people the way you're describing what the future iteration will look like. So I think that's really great that that's in the works. What other things is the Society working on that you're excited about?

[43:39] Lara Bloom: We're about to launch an app, which is super exciting. It's going to be quite basic at the beginning because the purpose of it was to be a place for diagnostic pathways, which are now not going to be published until 2026 — originally we were working on that now, so that's going to be a little bit delayed. But it's also going to be a way for people to socially connect, a way to access resources, a medication diary, a symptom diary. And critically, what we're then going to do is say, "Right, everyone — what would you like this app to be? What would you like the functions to be?" So that's going to be really exciting, and I look forward to that evolving and growing.
[44:18] I'm excited for Philly. We've got our Global Learning Conference in 2 weeks, which is great — still time to register and join virtually, if not watch it back. I'm excited for the Road to 2026 massively. I'm excited for the HEDGE results to come out next year. And I'm excited for just climbing that mountain, as I said. It's been a long time coming. I'm excited by how our staff team is growing. It's just a really exciting, optimistic time. I feel like we've been waiting a long time for this.

[45:05] Dr. Linda Bluestein: And if you had a magic wand and could make 3 things magically happen, what would those 3 things be?

[45:11] Lara Bloom: That people would get diagnosed at the point their symptoms began. That all doctors and all medical students were taught about EDS in a robust way in medical school. And that the 2026 publication lands well — that people get it, people embrace it, both community members and healthcare professionals. And that it takes us further to a place where all people living with these conditions can get access to a diagnosis and care.

[45:45] Dr. Linda Bluestein: Yeah, all incredible things. Also, one of the things that several people asked — and I have heard people ask about this before — they say, "Wow, look at Lara, she's doing so many things with the Society. She has this new family and has hypermobile EDS." So in terms of managing your own health, are there any things that you've learned along the way that you're willing to share?

[46:15] Lara Bloom: Yeah, and it's a really tough one because I don't share perhaps as much as I should about the struggles. I'm not very good at talking about that. If you go back over the last 15 years, you can probably find 3 or 4 talks that talk about me personally. I'm just much happier talking about the collective need.
There are things people don't see. I've been struggling desperately the last few months with a frozen shoulder, to the point where it hurts to swing my arm and walk. And you can imagine having a 16-month-old child, how hard that's been. I've ended up lying on the kitchen floor crying because I went to reach for a spoon and it twanged. I don't ever post about that. People see me at the gym and walking and carrying Lola, and life looks peachy. But I feel things — I am symptomatic. I have EDS. My POTS isn't great. I'm an older parent. I feel the physicality of being a parent really badly, much more than I thought I would. It's a vicious circle for me: when I'm moving and at the gym, I'm physically and mentally so much better, but I'm so busy I struggle to get there. I'm trying to be a good wife and a good mother, and self-care kind of comes last, and that then prevents you from being the best parent and wife and everything else. You try to be a good CEO, a good boss, a good this and a good that. And honestly, it's exhausting. And I don't share that maybe as much as I should.
[48:10] And — you've probably seen this, thank God not as much anymore — but around 4 or 5 years ago, I was getting a lot of trolling. When "Issues from My Tissues" came out, when the 2017 criteria came out. And it made me retreat quite a lot, because people were just coming for me, and I was like, "I just don't deserve this. I'm trying to do things to make people better." Accusations that I published the 2017 criteria, that I was using charity money to buy my house and fly my wife all over the world. And I'm just like, if you only knew the financial sacrifices I've made to do this job. And you can't defend yourself because you're giving oxygen to the flames.
[49:18] People have accused me of the most ridiculous, horrifically insulting things, and I've just had to watch it. And it really made me not want to give any of myself publicly. And then I realized that it's maybe 1% of people out there. There's 99% of people that are just so wonderfully kind and supportive. And touch wood, that has really stopped in many ways. Blocking certain people helps.
But what I wouldn't mind is if they were like, "Oh, I hate her haircut" or something you might go, "Okay, fair enough." But it's such baseless, factually incorrect lies that people then read and think are true. "Oh, I was gonna donate to the Society. I won't do that now." And you're just like, "Oh my God, it's so not true!" And you can't defend yourself. It's just been the hardest part of what I've done over the past 15 years — watching the lies and false accusations about me, about the Society, about how we've handled money. It couldn't be less true. So it's been frustrating.
[50:44] And I think, you know, I have the absolute privilege of having access to the world's best doctors for EDS, and I will never take that for granted. I hear the latest advice out there, I have private healthcare, I can get access to things. I managed to get a scan and my shoulder injected within a couple of weeks. And do not ever think that I do not know how lucky I am. But even that — I'll post a picture of my shoulder injection and someone goes, "Oh, you're all right, you've got private healthcare. What about us?" And it makes you just go, "I'm not gonna share anything." Or you share something and people say, "Who's your doctor? Where do you go?" It's really difficult to find a balance.
[51:31] And I choose not to show my daughter's face on social media, and then people ask, "Why do you never post your daughter's face?" Yeah. It's like, really? So it's difficult.
[51:49] But how do I cope? Simply put — I keep as active as I physically can. I eat as cleanly as I physically can. I take supplements that I have evolved and worked with over the years. On the whole, it's high-dose vitamin C, D, and B12, a bit of magnesium. And touch wood, that keeps me having a really good quality of life. And I know how lucky I am to have that.
[52:18] People don't see me curled up on planes in so much pain, not knowing how I'm gonna get off and then present. I remember being on the Eurostar to Brussels to present at a 10-year anniversary event, and I was physically being sick the entire journey. And all social media saw was me getting to King's Cross and then a picture of me on stage presenting. I didn't talk about the fact that I was sick the whole way. I just got on with it.
[53:10] So yes, I have a very good quality of life. Yes, my health has actually improved. And I think that's partly because of not having surgeries, and moving much more. The marathon taught me the power of movement and how incredibly impactful it is for EDS — how having strong muscles can really change things like your POTS and everything. There are definitely things like that that have improved things, but it's not a cure. I don't not have symptoms — I just have them much less. And when I do, I'm able to manage them much better. That's the difference.
[53:51] But it's tough. When I got into this, "public figure" was never on my list. It just kind of happened. People think I'm this or that — "The Lara Bloom Show," "Lara's so arrogant." And it makes me cringe talking about myself. When I'm recording my vlog, I'm thinking, "Do people even want to see this?" But then you've got people going, "Oh, I love seeing your vlog." So much of me wants to shut all of my platforms and just get on with my work. I think about that so often. But I know how many people I'm touching and helping. The number of people I meet who say, "It was because of you I got diagnosed 10 years ago" — that keeps you going.
[54:39] And like I said, the reality is it's 1% that's the negative voices, but they seem to have microphones and seem so much louder and more deafening. And it can be a cruel space. Yeah, it can definitely be a cruel space.

[55:05] Dr. Linda Bluestein: And it's so hard because, yes — first of all, we're all so grateful to you and for all the incredible work that you have done. And I feel very confident that it is a very, very tiny minority. And yes, I have absolutely experienced that too. There's also HIPAA, of course. I've had patients who weren't happy because of something — they wanted a particular prescription for something — and they would post about it, but I can't go on and respond or say anything. So you obviously say nothing. And it is really, really hard. Because even though those instances are very rare, they do affect you. It's really hard for that not to affect you. As humans, we're wired to pay attention to negativity because it could save our life in a lot of instances. So it's really hard to consciously overcome that, even when we try.

[56:18] Lara Bloom: Yeah, it really is. Yeah.

[56:22] Dr. Linda Bluestein: And getting back to the frozen shoulder — I just wanted to comment, I've had frozen shoulder once on the right and 3 times on the left. One time I fell on my shoulder, and that's what started it the first time on the left. But the last 2 times it started on the left, I just woke up with it. I woke up in terrible pain and I don't know if I did something in my sleep or whatever. But at least in my case, the beginning is much more painful, and then there's the stiffening phase. And it's ironic because we start out with multidirectional instability — I was diagnosed with that many, many years ago — and it's like, wait, then how do I end up with a frozen shoulder? But I know exactly what you're talking about.

[57:10] Lara Bloom: Putting deodorant on anymore is impossible. That's exactly where I am right now. But in the last 72 hours, I'm finally feeling some relief from the injections I had. So I'm hoping the thaw is not too far away. I'm going to be starting physio after the Global Learning Conference, so fingers crossed things will improve.

[57:37] Dr. Linda Bluestein: That's so important. And for me, I was told, "Do not have surgery for this" — I had been proposed surgery, yeah. So I was definitely happy to hear you say that, because we do get offered that sometimes. And of course, every person's situation is different, and don't anyone take that as medical advice. But physiotherapy is so important for conditions like that and can make such a huge difference.

[58:08] Lara Bloom: I had to wait a month. That's why I've just been wanting to do it, but he wouldn't let me. He wanted 4 weeks from the injection before I started physio.

[58:20] Dr. Linda Bluestein: Really interesting. I never had to wait that long, but that is interesting. I'm going to physical therapy today, and I will ask if they've ever — this person is actually treating me for my frozen shoulder. They have been for over a year now — treating me for bout number 3. You have my deep sympathies.
[58:40] Yeah, it's like you said, it is painful. And I don't share much about my own struggles either, for a variety of reasons. But yeah, it is tough, definitely, having these conditions. We know that the path is not linear, and even though I'm doing a lot better now than I was a decade ago — a lot, lot better — we still can have our challenges for sure.
[59:06] So we finish every episode of this podcast with a hypermobility hack. Of course, you've already shared a lot of great things with us, but if you have a hack you'd be willing to share, that would be fabulous.

[59:19] Lara Bloom: Honestly, I would say my hack is movement. It's changed my life. Something I've also just introduced recently, which is helping, is I'm trying to move for 5 minutes of every 30 minutes. Now, this isn't a great example right now — I've been on here for well over an hour — but before, if I had 10 minutes between 2 calls, I would sit and catch up on emails. Now I will go on my treadmill, which is next to my desk, and do 5 minutes. And that regular movement — I've got my Oura Ring and my Apple Watch, and it's improving my HRV and my scores. Just having that movement — it's just walking, it's just 5 minutes. But sitting down all day for an EDS body is not the one. So movement, movement, movement — in a way that makes you smile and feel happy, because it has to be every day for the rest of your life. And that's what I think people don't realize. You've gotta see it as medicine, because I truly believe movement is medicine.

[1:00:28] Dr. Linda Bluestein: It's very interesting that you said that, because I do a lot of virtual visits with patients, and I also offer consultations for clients all over the world. And I often find myself spending the entire day telling people to move, and I realize how little I've moved over the course of the day. So I think that's great. And Dr. Stacy Rondra Patric, who has a great podcast called Find My Fitness, she talks about exercise snacks — and that's exactly what you're talking about, doing just 5 minutes of movement in between whatever else you're doing.

[1:01:06] Lara Bloom: I like that. Snacking on my movement.

[1:01:07] Dr. Linda Bluestein: Snacking on your movement, yeah. Because I think sometimes we think, "Oh, if I don't have time to go to the gym, or if I don't have time to do this whole process, then I'm not gonna do it at all." But what you're sharing is very, very important. Every little bit helps. Indeed. Okay, well, thank you so very much for sharing so much great information with me and for taking the time. I know you're incredibly busy. Before we go, can you let people know where to find you?

[1:01:39] Lara Bloom: So you can find me if you type in Lara Bloom on most platforms — Lara.Bloom, B-L-O-O-M. It's Lara.Bloom on Instagram. I think the same on Facebook and LinkedIn. I don't go on X anymore. And the Ehlers-Danlos Society is ehlers.danlos on Instagram. And if you just type in the Ehlers-Danlos Society, you'll find us at www.ehlers-danlos.com.

[1:02:07] Dr. Linda Bluestein: Well, thank you again so very much. It was so great to see you and to chat with you and find out what you're up to.

[1:02:14] Lara Bloom: Thank you.

[1:02:15] Dr. Linda Bluestein: We'll catch you next time on the Bendy Bodies Podcast. Wow, that was such a great conversation with Lara. I know so many people are wondering what the Society is doing, and they are doing so many things behind the scenes. And it's so important for us to be aware so that we can appreciate the incredible hard work that Lara and so many others at the Society are doing.
[1:02:36] And I want to thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. Help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. By doing so, you can really help raise awareness about these complex and still misunderstood conditions.
[1:02:51] You can also find me, Dr. Linda Bluestein, @hypermobilitymd on Instagram, Facebook, TikTok, X, and LinkedIn. If you'd like to meet with me one-on-one, check out the available options on the services page of my website at hypermobilitymd.com. You can find Human Content, my producing team, @humancontentpods on TikTok and Instagram. You can also find full video episodes up every week on YouTube at Bendy Bodies Podcast.
[1:03:24] To learn about the Bendy Bodies Program disclaimer and ethics policy, submissions verification and licensing terms, and HIPAA release terms, or to reach out with any questions, please visit bendybodiespodcast.com. Bendy Bodies Podcast is a Human Content Production. Thank you so very much for being a part of this community, and we'll catch you next time on the Bendy Bodies Podcast.