Examining The Future of EDS Diagnosis and Care with EDS Society CEO Lara Bloom (Ep 102)

Dr. Linda Bluestein: [00:00:00] Welcome back, Every Bendy Body, to the Bendy Bodies podcast with your host and founder, Dr. Linda Blustein, the Hypermobility MD. Today's guest is Laura Blume, President and CEO of the Ehlers Danlos Society. I first met Laura in 2017 when I attended the Ehlers Danlos Society conference in Las Vegas and it was so exciting to meet her and 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, a lot of, uh, 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 are they working on now.

Laura Bloom is President and CEO of the Ehlers Danlos Society and [00:01:00] responsible for globally raising awareness of rare, chronic, and invisible diseases, specializing in the Ehlers Danlos syndromes, hypermobility spectrum disorders, and related conditions. Laura leads coordinated medical collaboration, raising funds for research and focuses on global progression, education, and awareness.

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 Laura Bloom, President and CEO of the Ehlers Danlos Society. I'm so excited, Laura, to jump into these questions with you and would love to start out by hearing about yourself and your experiences advocating for rare diseases. Sure,

Lara Bloom: absolutely. Well, it's a pleasure to be here.

And I have been [00:02:00] 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. And I started With absolutely no intention to still be here, or 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. And I think I've, what I've enjoyed the most about my career thus far is the breadth of how many different areas I'm able to kind of touch in 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.

Wonderful and [00:03:00] geeky for me, and I really enjoyed that aspect of it. And of course, now on a global stage, since, you know, moving from EDS 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. Wow,

Dr. Linda Bluestein: so next year it will be your 10 year anniversary?

It will, yeah. That's incredible. So, so of this 90 percent then of the decade, um, what are the things that you're, that you're most proud of or think are most significant that's happened over that time?

Lara Bloom: I think certainly turning in the vision, the global vision I had in 2015, into a reality and seeing that through and it becoming more successful than I, than I ever dreamed, um, is the thing I'm most proud of.

And then from that stem so many other things. And if we go back to 2015, I was, you know, I was still working for EDS UK. I was a member of on the board of [00:04:00] directors for EDNF, which was the US 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, the medical professionals out there wanted it, the researchers wanted it, there was a need, you know, for the national organizations, there was so much fragmentation. It was just, It was not a positive place to be. There hadn't been a revised diagnostic criteria for two decades, and people needed steering.

And it needed to be from this kind of global umbrella perspective. And so in 2015, I remember very clearly, I got on a call to, uh, to Shane at the time, 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 [00:05:00] me to set up an international organization for a year?

And I'm pretty confident that after that year, I would have 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. Um, you know, this is a bit scary.

And in July of that year, I left EDS UK, which was a big decision. Um, and cause you know, I was really enjoying things there. Things were progressing at that, you know, 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 it, I just knew that. to really make systemic change that need to be, to be done globally. So that first year, I'm not going to lie, it was really tough. It was really tough. We thought it would be this thing that everyone had said they wanted. You know, we went round and we literally kind of shopped [00:06:00] 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. Like this, the funding is going to come rolling in. And, and it was, 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 U.

S. organization and relaunch as the Ehlers Danlos Society. So, that made things a little bit easier. And then in 2016, at the Global Learning Conference that was at the time, we launched officially the Airless Download Society with our new logo and new mission and, um, and it was an exciting time and even then it was still a slow burn, you know, we were still like waiting for the millions to start rolling in because that's what we needed to do.

And obviously in parallel to that, All the work was going on for the 2017 Diagnostic Update. So that's where most of all the energy [00:07:00] was going on in terms of facilitating that work. And it wasn't really until 2018 that things finally started moving in the right direction. And I remember really clearly such a vivid memory standing on a rooftop in New York with Shane.

And we were there on a site visit for the 2017, 2016 symposium that. that um, that happened for the criteria work and we were just looking out and it was just 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 that this is gonna work and I was like it needs to you know there's so much need There's so much we have to do.

And here we are in 2024. We've raised 14. 5 million in research. We launched the biggest and first, you know, genetic study for hypermobile [00:08:00] EDS. Whole genome sequencing a thousand people from all over the world during a global pandemic. We've, we've trail blazed lots of ways and I'm really proud of us and the amount of people it takes, you know, people often see my face everywhere but my God, it takes a village, you know, the doctors, the The staff, the people that have put their time and energy into all of the things that have made this a success, you know, building our biobank, our registry.

We've got, you know, 17, 18, 000 people now from around the world on our registry. We're, you know, funding research that there was never before a place for researchers to come to apply for funding, you know, in a consistent way. Um, We're reaching thousands of people through hybrid events. You know, we're translating material into lots of different languages.

We're touching people in Peru and, you know, Panama and everywhere you can think of. It's just crazy and, and it's wonderful. But what still astounds me is after all this time and after all [00:09:00] 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.

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, do you have thoughts as to why that's continuing to happen?

Lara Bloom: You know, I think we still have decades of neglect to, to heal from, and There's one thing [00:10:00] 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 the 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 over diagnosed, it's over medicalized, it's this, it's that. And it might be over diagnosed.

You know, I think it's one of the one conditions that is both over and miss and under diagnosed. Yes. And how does that happen? Well, you know, it's because 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 in the absence of being able to reach a medical professional.

Um, and so there's an element of that. But that's because of the lack of good [00:11:00] 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. You know, 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, you know, all of these abundance of things. 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 that's what frustrates me so much.

It's not just well people sitting there thinking, what could I give myself as a condition here? You know, it's people that are genuine, genuinely struggling, uh, you know, with very real symptoms that need to be

Dr. Linda Bluestein: managed. Yeah. I think that's a good point. A big frustration that I have is a lot of my colleagues, um, think that because somebody when they come [00:12:00] in for an appointment and they're almost disappointed if their imaging and their lab tests come back, you know, normal or unremarkable, um, that, 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 not answers, and then when their clinicians don't have time to really investigate or have the, or have the proper training. Because we know that, you know, the Ehlers Danlos syndromes, but especially hypermobile EDS, because we don't have a genetic marker for it yet, is Definitely requires training and time to make that diagnosis correctly.

So, yeah, yeah, I agree. I think it's overdiagnosed and underdiagnosed at the same time.

Lara Bloom: Yeah. And, and, you know, it's, it's not good enough, whichever way you look at it. And I really believe, like I, like I said, that we're at a really transformative time and that the work going on between, you know, on the road to 2026, the next diagnostic publication, the next review of things [00:13:00] is going to really set the, this, the scene of really where we are.

Based on, you know, a lot of research, multi center, you know, peer reviewed research that's going to get us to a, uh, a state of affairs that people can really trust in and listen to, and that will be the start. 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, you know, it, the, the consortium did the best they could, you know, but now, Mm hmm.

They're so much more equipped to really have a very compelling publication come out of this. We're going to have the results from Hedge and other studies that are going on looking at biomarkers. We can say, is this more than a clinical diagnosis? Can people have tests for this? Is HEDS and HSD the same thing?

And, you know, what does that mean if they are? What does it mean if they're not? You know, 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 [00:14:00] start to say, okay, what's the prevalence of this thing? You know, is EDS rare? Is, is hyper, well we know, 13 of the 14 types are rare or ultra rare.

What about that one type? You know, is that prevalent or is actually, you know, there's just a thousand and one questions that are still unanswered. And that to me answers your question of why, 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, my, you know, The thought, genuinely, is that 2026 onwards, we're going to 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

Dr. Linda Bluestein: now.

And the 2017 Hypermobile EDS Diagnostic [00:15:00] Criteria, even when they were first released, I remember what, it was you and Claire, Dr. Claire Francomano together who, yes, I remember that because that was in March and I had just written a paper about pain management with joint hypermobility and I remember watching that.

I immediately emailed the editor and I said, I need to rewrite the entire introduction because they just changed the diagnostic criteria and this is, you know, too important to, to, you know, have something go out that has late and old information. Yeah. So, uh, 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 at that time.

And, you know, a lot of people were upset, right? A lot of people were like, You know, 'cause they thought they were afraid they were gonna lose their diagnosis and probably some people did. Um, and like you said, the consortium did the best that they could at that time. Mm-Hmm. , what are your thoughts, knowing now that there's the road to 2026 and this is being, you know, revisited, but what are your thoughts on the 2017 [00:16:00] criteria for hypermobile EDS?

Lara Bloom: I think that they. They improved things, uh, despite what people think. I think that it was very, you know, and I say we, uh, you know, 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 to come out of it, and I gave my lived experience of what I thought should be, you know. And, Some of it was taken on board, most of it wasn't because, you know, 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 part of that process. We have a community voice in every group of the consortium. So that was incredibly frustrating on a personal level that people just were like, Lara [00:17:00] Bloom decided the whole thing. It's based on her phenotype. What? Like, it's just, it's almost an insult to science that that's what they thought.

So my biggest hope for 2026 is people don't blame me for it. Uh, you can blame me for making sure it happened because absolutely, they are, you know, we, I said at the time in 2017, we are going to do everything we can to make sure that this is much more regularly looked at and assessed. And, you know, the things that have gone into it, like the HEDS and HSD criteria review, the HEDS 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 two or three years.

So, you know, we are committed to ensuring that we facilitate that regular review of what's out there. And we're improving that all the time. Um, I think that it was more of a research criteria because without the 2017 [00:18:00] criteria, we wouldn't have been able to do HEDGE. Um, so, yeah. You know, it helped with that, and it helped with other research studies.

It helped a lot of people who were uncomfortable with diagnosing EDS, hypermobile EDS, to get on board with HSD. But I think what we've learned from that is also it was confusing, even for people who really know the conditions, to really decipher what the difference is between the two. So, do I think that it was, it was Perfect?

Absolutely not. Do I think it was as good as it could have been with where we were in, in that time? Yes. Um, 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's more people being diagnosed, there's more people aware, there's more published.

at articles out there. There's more researchers out there. There's more doctors out there. There's more people wanting to be part of Echo than ever before. So, you know, whatever it [00:19:00] did, it opened up the space and it, it did definitely move things along in the right direction. 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 that are, you know, being done. We've got a phenomenal group of people that are really critically looking at every single aspect, you know, um, of what comes out. And most importantly, as the society, our role is to then be the bridge between the science and the community.

You know, how do we communicate what comes out? How do we, you know, if it comes out that, you know, you know, X, Y, and Z. How do we then say, you know, let's just say hypothetically that, and this isn't ever going to happen, but hypothetically there's a gene found for hypermobile EDS and it, it's everyone with hypermobile EDS has it, never going to happen.

But let's just say, we then have to think, okay, that's great. But what about people all over the world [00:20:00] that can't access a geneticist or genetic testing? You know, so how do you make that work all over the world? So, Even the positive things that could come out of this are challenges. So we need to make it equitable.

We need to make it accessible. We need to think about language translations. We need to think about lay translations to make plain language summaries. We need to take what's there and say, okay, what's the reality of this for you? And In 2017, we probably didn't do as good as we should have done because we were so much smaller.

There were like three or four of us on staff at that point. We had no idea, you know, what was going to come back. So we didn't plan in the way that we're planning now for all the eventualities and the comms and, you know, we're reaching millions of people now every year through our platforms on our website.

At that time, it was so much smaller and it, like I said, the team was so much smaller. It was two or three of us, 24 hours a day on social media trying to [00:21:00] reply to it. We've now got an entire comms team. So, you know, it's a different time, we're in a different place. But I think without 2017, we wouldn't be here now.

Dr. Linda Bluestein: And I think the titling of the next criteria is so good because the road to 2026, I think really does help. People to understand that it is a process and that it, you know, I think people get frustrated like 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, right?

So exactly people that are not doing that, they don't realize like how much time and how much conversation and literature search and research goes into those kinds of things. So I think that's a really important thing for everyone to be aware of. And another thing that, uh, as I'm sure you are aware, that's kind of I don't want to say controversial, but the Byton score as a tool for generalized joint hypermobility is, [00:22:00] uh, you know, I mean, every, everything in medicine has limitations.

We take, we're trying to apply things to complex human bodies. And I'd love to know your thoughts on the Byton score.

Lara Bloom: Yeah, it's not what it should be. It's a very old tool that's been around and it's like one of those things where you just keep using it. But I'm glad to say it's part of the, um, criteria study, the Baton score is being reviewed and looked at and to see and assess should more joints be added?

Should it be done in a different way? We've also got other tools that have come along like the spider, um, chart that has been recently published. You know, how can we use these tools better and how should we ensure that they are what's used and how they use? So, all of that's what I mean by This is so much more of a robust process.

The, 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 back [00:23:00] to basics we're taking this. And the whole thing is being done through a Delphi process. And for those who don't know what that is, I recommend you go and see it. It's such a great rigorous research tool and a process for how things are done.

Um, and, you know, It makes it so robust in terms of the diversity of people, uh, taking part in it and the range of expertise that you have involved. And it just makes it a really rigorous process. So that's being done and that wasn't done in 2017. So we, what I'm proud of is that was 2017 perfect? No, but have we learned our lessons from it?

Yes. And are we making changes? Yes. And that's only, you know, a positive thing.

Dr. Linda Bluestein: And we already talked about some of the barriers to getting a diagnosis. Are there other barriers and what do you suggest for people who who are really wanting to get a diagnosis? Maybe you know, of course, the Ehlers Danlos Society, as you said, reaches people in every country and the in the world.[00:24:00]

And there are a lot of listeners of this podcast that are in many, many different countries and of course, uh, have various different economic concerns. So what do you recommend for people who are struggling with that?

Lara Bloom: I think, you know, 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 Unfortunately, it's fact. Are people like the Society and many others out there trying to change that and move that dial? Yes. Things like EDS Echo, trying to move knowledge, not patients, trying to, you know, and assist doctors in local areas to be able to care for, you know, people living where they are, instead of having to wait three years to see people like Dr.

Frank Amano and, you know, the experts out there that have such long [00:25:00] lists. We need to increase medical education. We need to get students learning about these conditions, and a lot of that kind of 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 gonna change in a couple of years.

So we're on a bit of a holding ground right now, you know, and I say that, but let's There's still a tremendous amount going on. All the biomarker studies, the biobank being built up, the registry being enrolled on, you know, 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, you know, it's published and out there, we will be going to all of the conferences. We will be holding talks in as many places as we can. All the consortium, we will, you know, have funding to offer talks. speakers to go out there, spread the word, get it [00:26:00] out there, educate, disseminate, spread that knowledge, get people aware.

We're, you know, 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 so that we can get to that point. And when we, you know, let's just say we've got diagnostic tests at that point, we're going to have ways that we can then say to people in Africa or Asia, you know, this is how you might be able to access that.

Can we partner with labs that might? I'm so excited to offer, you know, reduced testing. All of those things are for the future, and absolutely need to happen to get to a place of accessible, equitable care. Right now, I feel like we're kind of horizon scanning that, and it feels like a long way off. But I'm so energized and excited by what's happening.

2026 onwards because I feel like we'll finally, that's what I mean by the tools, the oxygen, the stuff. It's like, I feel like we're all mountain going, you ready? You ready? You ready? You know, and we're like packing our bags and we're ready for this hike. And that's, that's what's happening now, that road 2026 hedge, you know, all of these [00:27:00] things.

And it's like, boom, let's go, let's climb. And that's what's going to be, what's You know, from beyond, and to think that by that point, you know, God knows how many years it would have been to think we're just almost then. Moving forward, instead of healing the wounds of the past, um, 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. Um, and, but I understand how frustrating it is for people out there to be patient and to wait for that time when we've all waited so long to get the quality of life we deserve.

Dr. Linda Bluestein: And, you know, I think it varies probably by, 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 about what's, what's happening now and in terms of priorities of the society. For a person who is, you know, just, just first learning about [00:28:00] these conditions, how important do you think an official diagnosis is.

Lara Bloom: So, I wish it wasn't important, because the reality is, people should just get their symptoms managed and treated.

Now, but let's now be real. There's health care, there's insurance, there's, there's, uh, you know, support systems out there from government and benefits and things that we, that all 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. It's also needed, I think, you know, there's a, an element of it psychologically giving you that validation, um, and that, you know, answer to that question that, you know, some people have been asking for decades, and 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 and they want to have something, you know, tangible to be able to say, okay, it's this. [00:29:00] Um, so I do think it's important, but I, I think that it should be an equal battle to going, okay, if I'm struggling to get a diagnosis right now.

Can I speak to my primary care doctor or another doctor about how at least I can manage my symptoms? And if I'm then getting the barriers of, you know, I can't do that because, you know, you just have to keep self advocating. And we've got lots of recent resources on our website to support that. But again, I'm going to be real with you.

It's really frustrating because, you know, it's, you know, 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.

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 Laura's take on a super important question.

The differences between HSD and HEDS. Is there a difference? And is HSD less significant than HEDS? Heads or hypermobile EDS, we'll be right [00:30:00] back.

This episode of the Bendy Bodies Podcast is brought to you by EDS guardians, paying it forward in the Ehlers Danlos syndromes community patient to patient for the common good. I'm proud to serve on the inaugural Board of directors for EDS Guardians, a small charity with a big mission and a big heart.

Now seeking donors, volunteers, and partners. Patient advocacy and support programs available now. Travel grants launching in 2025. Learn more, shop for a cause at their swag store, and join the revolution at edsguardians. org. And we're back, and of course, we know that the 2017 criteria were so important, as Laura has already explained.

This was such a critical, A critical piece of trying to solve this incredibly complex puzzle and people that are having these multisystemic symptoms and, you know, I was also one of those people desperately struggling to get help and a diagnosis and understand what was happening [00:31:00] with my body. And at the same time that we know that hypermobile EDS, you know, that the 2017 diagnostic criteria for hypermobile EDS, not everyone meets that criteria, right?

And including some people who already would have had a diagnosis. And we say over and over and over again that HSD can be just as serious and in some cases even more so. But, um, there's a lot of confusion still, right? Are these, are these separate conditions or are they actually the same condition? Or we also, you know, is HSD, is it less serious than hypermobile EDS?

So I would love to get your take on all of that.

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 that are unable to get out of bed or are using wheelchairs and, you know, [00:32:00] so it's, it's really, um, Not something to compare in terms of severity and HSD was, was penned with the best of intentions by the doctors who wanted, you know, it goes back to your first question of why is a diagnosis so important?

It was because they understood the importance of a diagnosis and where people, where there was the acknowledgement with this new criteria, there would be people that didn't meet it. They still wanted them to have a diagnosis. and to have their symptoms managed and, and, and, you know, try to be controlled.

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 potentially on how it then landed. It wasn't workshopped out there, it wasn't scoped out other than at the, you know, the, the symposium just a few months before and within the consortium group.

I, I think that again, we learned from that of, okay, this is great conceptually, it answers this [00:33:00] question, it answers that question, but what's the reality of how it's going to land? And the fact that there's doctors in our EDS world that still can't actually definitively answer the difference between the two and think it's the same thing.

So do I think it's the same thing? I'm gonna not answer that question, um, because it's being worked on and it, you know, it doesn't matter what I think, because it's not going to influence the outcome of what happens. I am, I am waiting for the group to decide. And the HEDS and HSD criteria study of which the only involvement I had was to secure the funding to make sure it happened.

You know, it's been a multi site endeavor and I don't even know the outcomes so far. Um, we, we will learn as we go as to what that study told us. You know, 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 still very embryonic, as you know, we've only just tossed the consulting groups with what's [00:34:00] being done, and still aren't, you know, tackling the what is EDS question. So things are, you know, we're still at the beginning stages. The big questions surrounding HEADS and HSD are going to be tackled the, uh, kind of Q1, Q2 of next year.

So that's when that, you know, meaty piece will be discussed and then presented at the 2025 Toronto International Symposium, uh, where that workshopping will take place. You know, it will all be going through the Delphi process. And so it's going to be, like I said, really rigorous, rigorously, rigor, I can't even say that.

It's going to really be looked at in the way it needs to, with the amount of people it needs to, internationally, all different levels, community people as well, going to be looking at this. It's going to be done the way it needs to be done. And so all I want to come out of this is clarity for the people.

For the community impacted by these conditions and for the healthcare professionals treating us, [00:35:00] 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 what that will be, genuinely. Um, but I know a change is needed.

I think

Dr. Linda Bluestein: a change is needed. And, and in terms of, you know, uh, people are probably listening to this and thinking, oh my gosh, I didn't realize how much was involved. Hopefully they're thinking, oh, I didn't realize how much is involved in how much time people are spending on all of these different processes.

So at the society. When you add together all of the different consortiums, which I don't know if that's the plural of consortium, I hope so, um, when you, when you add them all together, um, and most of those people of course are, are volunteers. There's a small, still relatively small staff, I, I believe at the society, but How many people are we talking about when we add all of the consortiums [00:36:00] together?

And I know you said there's a community representative on each committee, which I'm definitely aware of for our committee. Um, but how, do you have any idea how many people that is? And can you explain to us a little bit about kind of how, how that process works again, just because I think it's so important for people to understand all the background work that's going on.

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 and at the time I think we had 90 members and it was really the the the main names in this field and it was divided amongst each group was divided amongst the comorbidities so we had the obvious the GI, the neurology, the pain group, fatigue.

We've now We've grown in the amount of groups we've got. We've got things like now, uh, haematology. We've got, uh, pulmonology. We've got, um, ENT. We've got, you know, so many different [00:37:00] diverse groups, uh, in terms of the multisystemic ways that this can present. As we said, you know, In that group, we've got healthcare professionals on the whole, but we've also got community voice in each group.

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, um, which is phenomenal. And not some, 100 percent of those people are volunteers. We do not pay any consortium members, which is phenomenal, that in all that time, nearly a decade, these people have been tirelessly working to progress things.

We've in their spare time. We've got people on Zoom calls at two o'clock in the morning for them from Japan, Australia. It's just phenomenal. It's heartwarming. Honestly, uh, we are so lucky that we have the amount of people in the healthcare, you know, arena that are committed to improving things for us. So that is just astonishing.

And then people apply. to join [00:38:00] those groups. And when we've got a space for the community, uh, voice, they apply for that too. And it's up to the chair of each group to then, and within, and their members to decide who gets in. So we, as a society, just facilitate it. We don't control, A, what comes out of the groups.

We steer in terms of the need, um, but we don't say, you know, we need this to say this. Can you help us, you know, get that out published? It's, it's like, this is the need. Please work together collaboratively to, you know, see what that looks like. And it's been wonderful. There's been lots of collaborative publications.

It's kind of broken down the silos that were there previously. Everyone is working collaboratively. It's, it's wonderful to see. Um, and it's what's moved the needle. It's what's driven us forward in this direction. So yeah, a ton of people working hard. We, 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's [00:39:00] now almost 40 of us. So it's actually not that small. But that growth has really happened since 2018, 2019. Um, and it's just gone, you know, it's crazy. Um, but we're doing so much work that, you know, you, you need, it takes. So much to make this all happen, you know, our engagement just in May alone touched like six to seven million people.

So you can imagine the amount of online work it took for all the messaging and the comments and the, you know, it's just amazing. Enormous. And, you know, we're stewarding now 14 donations to Progress Research. We're doing RFAs, you know, we've got our research and registry team now is really big and, and it's wonderful, but it's also You know, it was really interesting when we announced that 14 million, um, that we got donated, um, to date, so 10 of it [00:40:00] last year.

We saw a decline in our research donations, and I think that there was a mentality of, oh, they're good, you know. 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 percent of that, which is actually very low overhead.

You know, 10 percent of a million is only 100, 000, say, I say only, but that really doesn't touch the sides when you're running an organization with nearly 40 staff from all over the world. We've never had an office, we've never had bricks and mortar, we want the funding to go into the mission instead. Um, so we really do Keep our costs down as much as possible, but it's, it was interesting for us to, you know, you shout about the successes and then the, the keeping the lights on money goes down.

So it's, people really don't comprehend what it takes to get to that point and what it takes to continue it. You know, it's a lot. [00:41:00]

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 health care professionals directory and I think there's some misunderstanding potentially about what that involves.

I know when I. throughout the question for, you know, what would you like to know from Laura? Uh, when I asked that question on social media, I did have some people say, ask questions about the healthcare professionals directory and or ask, you know, how do I add my doctor? Uh, can you explain a little bit about how the directory works?

Lara Bloom: Yeah, it's a great question. It's a great timely question because it's all about to change. So up to this point, again, because of capacity, all we were able to do were allow people to. And we had very little involvement in that. We didn't have the capacity to be able to go out there and proactively, uh, add people.

But if you go onto our website right now, you will see that we are actively recruiting for an outreach [00:42:00] coordinator. And the primary role of that person is to, uh, Proactively go out there to manage your healthcare professionals directory to contact everyone on there, check that their details are correct, check that their, what their waiting times are like, check that they're still active, but also be able to work with the community and say, Right, send us your details of the doctors you'd like to add and for us to then go out there and try and get them added because it's not reflective of what's out there right now.

It, it's not really fit for purpose in the way that we want it to be. So what's really nice is we've just received a donation to be able to take that person on, um, 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.

Dr. Linda Bluestein: That's fantastic because, um, you know, I think it would be so much more valuable for people the way you're describing what the future looks like.

Uh, iteration will look like, so I think that's really great that that's in, that's a, in the works. Yeah. [00:43:00] What other things are you working on that you're excited about? So we're working on I guess you're not working on that specifically. I'm sorry. I should clarify. You're, you're, the society is hiring someone.

I'm sure you're not. No. Not me, literally, but the society. Yeah.

Lara Bloom: Um. Yeah. We're about to launch an app, which is super exciting. Um, it's going to be quite basic in 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. Um, so that's going to be a little bit delayed, but it's also going to be a way for people to socially connect. It's a way to access resources. It's a medication diary, a symptom diary. But 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. I'm excited for Philly. We've got our global learning conference in two weeks, which is [00:44:00] great. Still time to, I don't know when this is going to go out, but hopefully still time to register to join virtually, if not watch it back.

Um, I'm excited for the road to 2026 massively, you know, so much work going into that. I'm excited for the hedge results to come out next year. Um, you know, I'm excited. For just, you know, climbing that mountain, as I said, you know, it's, 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 think. And, you know, it's, like I said, I feel like we've been waiting a

Dr. Linda Bluestein: long time for this. And if you had a magic wand and could make three things magically happen, what would those three things be?

Lara Bloom: That people would get diagnosed at the point their symptoms began, that all doctors, all medical students were taught about EDS in a robust way in medical school, [00:45:00] and that the 2026 publication lands well, and that people get it, people embrace it, both community members and the healthcare professionals.

And it takes us further to a place where all people living with these conditions can get access to a diagnosis.

Dr. Linda Bluestein: Okay. Yeah. Yeah. All incredible things. And also what I, uh, throughout this question, one of the things that several people asked, and I have heard people ask about this before, um, they say, wow, look at Laura.

She's doing so many things with the society. She's has this new family and, and has hypermobile EDS, right? In terms of managing your own health, are there any things that you've learned along the way that you're willing to share?

Lara Bloom: Yeah, and I think, you know, it's a really tough one because I don't share, perhaps [00:46:00] as much as I should, about the struggles.

Um, I'm not very good at talking about that. You know, if you actually go back over the last 15 years, you can probably find three or four talks that talk about me personally. I, I just, I'm much happier talking about the, the collective need. Um, so there's things people don't see. You know, 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. And, uh, you know, I've ended up laying on the kitchen floor crying because I went to reach for a spoon and it twanged it. I mean I don't ever post about that. People see me at the gym, and walking, and carrying Lola, and, you know, life is peachy, but, you know, it, I feel it, you know, I feel things, and I, I am symptomatic, [00:47:00] I have EDS, I, my POTS isn't great, I, I'm an older parent.

I feel the physicality of being a parent really badly and much more than I thought I would. It's a vicious circle for me that, you know, when I'm moving and at the gym, I'm physically and mentally so much better. But, uh, I'm so busy. I struggle to get there. You know, I'm trying to be a good wife and a good mother and, you know, self care kind of comes last and that, and that prevents you from then maybe being the best parent and wife and everything else.

And you're trying to be a good CEO and a good boss and a good this and a good that. And honestly, it's exhausting. And I don't share that maybe as much as I should. Um, and. I think, you know, and you've probably seen it, thank God, not as much anymore, but, you know, around four, five years ago, I was getting [00:48:00] a lot of trolling, uh, when issues with my tissues came out, when the 2017 criteria came out, and it made me retreat quite a lot, because, uh, 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. And you're accusing me of publishing the 2017 project. I mean, just things like that just blow my mind. And, you know, 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 know how little that there has been and how we have to scrimp and save to bring her to come out with me and just all those things that you're just like if you only knew it couldn't be more factually incorrect and you can't Defend yourself because you're giving, you are, you're giving, you know, oxygen to the flames.

And, you know, people that have accused me of the most ridiculous, horrific, like horrifically [00:49:00] uh, um, insulting things. And I've just had to watch it and, and it just really made me not want to give any of me. And then I realized that that's this mu much of the people out there, it's like maybe 1%, and then there's 99% of people that.

are just so wonderfully kind and supportive and, you know, like I said, touch wood, that's really stopped as, you know, in, in many, many ways and, and it helps blocking certain people, uh, but it, I wouldn't mind if they were like, Oh my God, Laura Bloom, I hate her haircut. And she's so this, or she's so ugly and like things that like, you might be like, okay, well, maybe, maybe you're right, but it's such a shame.

It's so baseless, incorrect lies that then people read and think is true. Oh, well, I won't. I was going to donate some money 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. And, oh, it's just been the hardest part [00:50:00] of, of what I've done over the past 15 years is to watch the, the, the amount of lies and false accusations out there about me, about the society, about.

You know, how we've handled money and how, you know, it's just like, God, it couldn't be less true. So it's, it's been frustrating. Um, and I think that, you know, that I have the absolute privilege of having access to the world's best doctors with EDS and I will never take that for granted. So yes, I hear the latest, you know, advice out there and I have private health care and I can get access to things, you know, I was, 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 to do that.

Um, but even that, you know, I'll post a picture of my shoulder. Oh, you're right. You've got private healthcare. You know, what about us? And it's like, [00:51:00] so it just makes you then go, I'm not going to share anything, you know? And it's like, or you'll share something and people are like, who's your doctor? Who's your, you know, where?

And it's like, It's really difficult to have a balance of that, you know, and, you know, I choose not to show my daughter's face on social media. Why do you never post your daughter's face? Like, who do you think? Yeah, it's like, oh my God, like, really? So it's, it's difficult, but, you know, how do I cope? You know, to 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, but on the whole, it's high dose vitamin C, D and B12, a bit of magnesium, um, and on the whole, touch wood, that keeps me having a really good quality of life. And I know how lucky I am to have that of life.

You know, people don't see me curled up on planes. You know, in so much pain, not knowing [00:52:00] how I'm going to get off and present. I never forget, I was on the Eurostar to Brussels presenting at, um, a 10 year anniversary event. And I was physically being sick the entire journey. And all social media saw was me doing this, getting to King's Cross, and then the picture of me on stage presenting.

And I didn't talk about the fact that I was sick the whole way, who knows why. Um, I didn't tell anyone there. I just got on with it. And it's all of that, those pieces that people don't see that, that happen. And, you know, the, I'll pick up my daughter for a picture and you might not see me going to pick her up.

You'll just see the, the smile and, you know, it's, it's hard. So yes, I have a very good quality of life. Yes. My health has actually improved and I think that that's a way, in a way, not having surgeries, moving much more. The marathon taught me the power of movement, movement [00:53:00] and how incredibly impactful it is for EDS and how having strong muscles can really change things like your POTS and everything.

Um, You know, so there's definitely things like that that have improved things, but it's not a cure. You know, it's, I don't not now have symptoms. I just have them much less and when I do, I'm able to manage them much better. So I think that's the difference. Um, but it's tough, you know, when I got into this, public figure was never on my list of what I wanted to do, um, in any way, and it just kind of happened, and people think I'm this or that, and oh, the Lara Bloom show, and oh, Lara's so arrogant, and it's like, oh god, I'm just so, like, it makes me cringe talking about myself, but people, just wouldn't ever think that.

And, you know, when I'm recording my vlog, I'm like, Oh, do people even want to see this? And I'm just like, Oh, but you know, and then you've got all these people going, Oh, I love seeing your vlog. And it's like, Oh, you know, so much of me wants to [00:54:00] not do any of it, shut all of my platforms and just get on with my work.

Honestly, I think about that so often. Oh, yeah. But, you know, I know how many people I'm touching and helping and getting them to a place. You know, the amount of people I meet that go, it was because of you I got diagnosed 10 years ago. And I'm like, you know, so it keeps you going. And like I said, the reality is it's 1 percent that's the, the, the negative voices, but it seems like they have microphones and it seems so much more louder and deafening.

Um, and I don't know, you know, you may have experienced, um, uh, an element of it as well, but it can be a cruel space. So, uh, yeah,

Dr. Linda Bluestein: yeah, it, it, it can definitely be a cruel space and, and I, it's so hard because yes, I, uh, first of all, it, We're, 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 gotten that too. And of course, you know, there's also [00:55:00] HIPAA. So I've seen my, my previous, uh, office manager who also had EDS, most everyone who's worked for me has EDS. Um, on purpose, I hire people with EDS more so than people who don't.

Uh huh. And she would tell me things that people would write if they had been a patient and, um, if they had said, if they weren't happy because of something, you know, they wanted a particular, um, prescription for something and they would say that and they would, but you know, I can't go on and, and say anything.

So you just obviously say nothing. Um, and it is, it is really, really hard because even though those instances are very, very rare. They're very rare, but it does, it affects you. It's really hard for that not to affect you. And as humans, you know, we're wired to pay attention to that negativity because it could save our life, you know, in a lot of instances.

So it's really hard, I think, for us to consciously overcome that, even though we'd really try. Yeah. Yeah. It really is. Yeah, and getting back to the frozen shoulder, I [00:56:00] just wanted to comment, um, I've had frozen shoulder, uh, once on the right and three times on the left. And yeah, and one time I, I fell on my shoulder and, and that's what the first time that it started on the left, but the last two times that it, started on the left.

I just woke up with it like that. I woke up in terrible pain and I don't know if I did something in my sleep or, or whatever. But anyway, at least in my case, um, the there's the painful part that the beginning is much more painful and then there's kind of this stiffening phase. And, um, yeah, so hopefully you'll eventually get to, it's not like I have great range of motion now, but it's, it is ironic because we start out with, um, you know, multi directional instability that was diagnosed with many, many years ago.

And it's like, wait, Then how do I end up with a frozen shoulder? And I know, and I know exactly what you're talking

Lara Bloom: about. How can I not put deodorant on anymore? It's like, it's like, that's me. That, that's me right now. And it's like, you know, you're just like, uh, um, and, and in the last 72 hours, I'm finally feeling better.[00:57:00]

Some relief from the injections I had. So I'm hoping that the thaw is not too far away. So I'm going to be starting physio after the Global Learning Conference. So

Dr. Linda Bluestein: fingers crossed, things will improve. That's so important. And, and for me, I, you know, I was told, uh, do not have surgery. For this, I have been proposed to have surgery.

Yeah, exactly. And so I definitely was happy to hear you say that, you know, because, you know, we do get offered that sometimes. And of course, every person's situation is different. And if, you know, uh, Don't anyone take that as medical advice, of course, but, um, you know, physiotherapy is so important for conditions like that and can just make such a huge difference.

Lara Bloom: Yeah. I can't wait. I had to wait a month. That's why I've just been wanting to do it now, but he wouldn't let me. Yeah. He wanted to have four weeks from the injection before I started physio,

Dr. Linda Bluestein: so. Really? Yeah. Interesting. Yeah. Huh. I never, I never [00:58:00] had to wait that long, but that's really interesting. I'm going to physical therapy today and I'm going to, I will ask if they've ever, this person is treating me for my frozen shoulder.

So, uh, yeah, interestingly enough, and they have been for over a year. So this, they're treating me for, you know, bout number three.

Lara Bloom: You have my deep sympathies.

Dr. Linda Bluestein: Yeah. It's like you said, yeah, it is painful. And, um, and I don't share much about my own struggles either because, uh, well, for a variety of reasons, but yeah, it's, it's, uh, It is tough definitely having these conditions.

We know that the path is not linear and even though, you know, I'm doing a lot better now than it was a decade ago, a lot, lot better. But right, we, we still can have our, our challenges for sure. Yeah. 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 that you'd be willing to share, that would be fabulous.

Lara Bloom: Honestly, I would say my hack is movement. It's changed my [00:59:00] life. Something I've also just introduced recently, which is helping, is I'm trying to move for five minutes of every 30 minutes. Now, this isn't a great example. I've been on the, on here for well over an hour.

So, um, I'm trying to move Right, you know, and I spend most of my day on a Zoom call. But now, where before, if I had 10 minutes between two calls, I would sit and catch up on emails, I will now go on my treadmill, which is next to my desk, and do it for five minutes. And that regular movement, I've noticed is, I've got my Aura Ring and my, my, uh, Apple Watch, and it's improving my, like, HRV and, like, my scores, and just having that movement.

And it's just walking, and it's just But that sitting down for an EDS body all day is not the one. So movement, movement, movement, in a way that makes you smile and happy, because it has to be every day for the rest of your life. And that's what I think people don't [01:00:00] realize that they, you know, it's got, you've got to see it as if it's medicine, because I truly believe movement is medicine.

Dr. Linda Bluestein: It's very interesting that you said that because I do a lot of virtual visits with patients and I also consult with, um, I offer consultations for clients all over the world and I often will find myself spending the entire day telling people to move and I realize how little I've moved. Yeah. Over the course of the day.

So I think that's great. And, and Dr. Rhonda Patrick, who has a great podcast called Find My Fitness, she talks about exercise snacks. And that's exactly what you're talking about, you know, doing just five minutes of movement in between whatever else you're doing. So that's great. I like that. Snacking on my movement.

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 big process, then I'm not going to do it at all. And I think that, uh, what you're sharing is very, very important. [01:01:00] Every little bit helps. Indeed. Okay, well thank you so very much for sharing so much great information with me and taking the time.

I know you're incredibly busy. Before we go, can you let people know where to find you?

Lara Bloom: Absolutely. So you can find me if you type in Laura Bloom to most Uh, Platforms, L A R A dot bloom, B L O O M. Um, it's laura. bloom on Instagram. I think the same on Facebook, LinkedIn. I don't go on X anymore. Um, and the Ehlers Danlos Society is ehlers.

danlos on Instagram. And, um, but again, if you just type in the Ehlers Danlos Society, you'll find us and www. ehlers danlos. com.

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. Thank you. Yeah. So we'll catch you next time on the Bendy Bodies podcast.

Wow. That was such a great conversation with Laura. I know [01:02:00] so many people are wondering what all the society is doing and of course 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 Laura and so many others at the Society are doing.

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.

You can also find me, Dr. Linda Blustein, at 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, at Human Content Pods on TikTok and Instagram.

You can also find full video episodes up every week on YouTube at Bendy Bodies Podcast. [01:03:00] To learn about the Bendy Bodies Program Disclaimer and Ethics Policy, visit BendyBodies. com. Submissions and 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 their community and we'll catch you next time on the Bendy Bodies Podcast.