The Next Generation of EDS Experts with Jeevan Mann and Delaney Kenney (Ep 122)

Transcripts are auto-generated and may contain errors

Dr. Linda Bluestein: [00:00:00] Welcome back, Every Bendy Body, to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. This is going to be an exciting conversation today with two young people who are working in the lab of the Gates Institute here in Denver, Colorado. We're actually going to be talking about a very rare type of EDS, classical like hypermobility EDS type 2, which is related to a variant in the AEBP1 gene.

And the manifestations are not that dissimilar from hypermobile EDS and you'll hear some very fascinating information from Jeevan about how he had a different diagnosis at the beginning. So I think you're going to find [00:01:00] this a really fascinating conversation. Jeevan Mann is a returning intern to the University of Colorado Anschutz through the Gates Summer Internship Program, which gives undergraduate students the opportunity to conduct regenerative medicine research.

Last summer, Jeevan had the unique opportunity to work in the Gates Lab. developing therapies for Ehlers Danlos syndromes. Not only do multiple members of his family have a clinical diagnosis of hypermobile EDS, but in 2022, Jeevan was also identified as one of the few documented cases of AEBP1 related EDS in the entire world.

We also have with us today Delaney Kenney, who is working in the same lab and was diagnosed with hypermobile EDS in May of 2023. Her main role is to reprogram hypermobile EDS patient fibroblasts into induced pluripotent stem cells, which will then be used to elucidate and validate the molecular mechanisms behind this condition to help identify potential [00:02:00] therapeutics.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Let's get started.

Well, it is great to talk to Jeevan and Delaney today. Thank you so much for coming on the show. 

Jeevan Mann: Yeah. Thank you so much for having us. 

Dr. Linda Bluestein: Yes, absolutely. We're going to start with Jeevan, and Jeevan, I would like to know what you are currently working on in the lab. 

Jeevan Mann: Sure. So I'm working in the lab with Dr. Anya Bilisova, and we're working on the characterization of hypermobile Ehlers Danlos syndrome, also known as the most prolific type of Ehlers Danlos syndrome, and the only one that remains to be uncharacterized.

Dr. Linda Bluestein: And how are you studying hypermobile EDS? 

Jeevan Mann: So we're actually using an in vitro model of EDS using a 3D skin equivalence model. So what we do is we actually make a 3D equivalent of your skin using [00:03:00] fibroblasts and keratinocytes. And so we spent a few years developing a model for that. And then we're doing further testing on those models to actually look at how EDS presents under the microscope and then along with our other assays and testing.

Dr. Linda Bluestein: So right away I'm thinking, since hypermobile EDS has been so hard to wrap our brains around, or I should say so hard to like pin down, because we have like the clinical phenotype, right, the way that it presents clinically, and then the genotype is, is unknown as, as you said. So how do you go about making A model, a skin model, when we have so much information we don't know, how do you do that?

Jeevan Mann: Yeah, so I mean, it is generally considered to be polygenic, so there's multiple genes that are going to be associated most likely, but there are ways that we're able to actually recapitulate the models, and one way is using mice scenographs, which is where you use immunocompromised mice and you put The cell, the patient cells, which are the keratinocytes and the [00:04:00] fibroblasts into the mouse, and then it grows into a skin equivalent.

And then the new way that we've been working on is doing 3D skins. The 3D skins are not only cheaper, they take less time, and it's also a lot more efficient. We can run a lot of replicates at the same time. And then they also do have the same exact phenotype under the microscope that we see with HEDS, which is perfect because now we're able to study it at a far greater capacity with multiple replicates.

Although it took a lot of work in the front end, uh, we're actually starting to see some pretty good results with how they're looking. So we're pretty excited about that. 

Dr. Linda Bluestein: Okay. So I want to make sure I understand. So you basically, you have patients that have been diagnosed clinically with hypermobile EDS.

Jeevan Mann: Yes. 

Dr. Linda Bluestein: Correct. Okay. And then you are taking their, their DNA and injecting it into the mice or what exactly are you doing? 

Jeevan Mann: So what we do is we work with the EDS center of excellence on campus. So we work with Dr. Ellen Elias, who is the geneticist there, and she takes primary punch biopsies from patients who we've identified with a, we've identified with [00:05:00] AGDS.

So we have our patient cohorts and then we get primary punch biopsies from. The parents as well as the actual patients and then once we get those, then we start isolating the fibroblasts and the keratinocytes from those bunch biopsies and then we expand those. So, uh, the keratinocytes make up your epidermis, which is the outer layer of your skin and then the fibroblasts make up your dermis, which is the inner layer.

Dr. Linda Bluestein: I take it then on these skin biopsies that she's taking from the hypermobile EDS patients. They've already found that that's a good proxy for what's happening elsewhere in the body. And that's why you're using that as, as the, uh, using the fibroblasts and carcinotides from there. Correct? It's already been shown that that tissue is different than like controls or normal people.

Jeevan Mann: It is, yes. So, uh, in the literature there is a little bit of an explanation to why HEDS like has a phenotype and that's mostly attributed to the extracellular matrix. Uh, just [00:06:00] because collagen is an extracellular protein. So we're actually able to see that phenotype under the microscope. So you've probably heard of things like collagen flowers where the collagen isn't bundled properly and they look like flowers under the microscope.

So that's something that's pretty out there in the literature. 

Dr. Linda Bluestein: And then, so you, so you were then making like basically a mouse model of this, but also doing the 3d printing. So you have basically a couple of different ways. Am I understanding that correctly? Absolutely. 

Jeevan Mann: Yes. So, uh, not necessarily 3D printing right now.

We are going to be 3D printing hopefully in the future, but right now we're doing this by hand, which is a lot more manual labor, but it just allows us a little bit more control with the skins just while we're developing the model and perfecting it. But yes, we do have a mouse model as well, but those are a lot harder to do and they take a lot of skill.

And what are the goals of that research? So the goals of our research are hopefully to get a proxy by which we can assess EDS under the microscope, as well as hopefully validate any [00:07:00] mechanisms that we could hopefully find in the future. 

Dr. Linda Bluestein: And Delaney, how has the Gates Institute helped you on your journey with, you have a diagnosis I understand of hypermobile EDS, correct?

Okay. Um, how has the working with the Gates Institute helped you? 

Delaney Kenney: The main thing for me has been the support and understanding of everyone at the Gates Institute. Um, I've never really been in a medical or academic space where I'm surrounded by people who know so much about Ehlers Danlos Syndrome. Like, in my experience with a variety of professionals like physical therapists, dentists, and even in the emergency room, doctors have never even heard of it the majority of the time.

Um, so it's here, it's kind of helpful to know that I'm immediately understood by what I have and everybody around me understands it to the same level. Um, it's also great. In this kind of lane to be able to receive accommodations from the Gates Institute, um, because it's an invisible illness, so, so much of the time it's hard to describe to others what it's actually like, but here, because everybody around me knows what [00:08:00] it's like, um, it's very easy to like, if I am feeling super tired one day or have brain fog one day, I can get certain accommodations in the I can get certain accommodations in the lab, which has been super helpful.

Um, and it's also great to just be in a place where I could talk to other people like Jeevan who also have EDS. And it's amazing to be able to actually compare experiences and helpful tips and just be able to talk to somebody who has gone through similar things that I have. Um, in my family, my sister, my dad, both have each EDS, but we have like completely different symptoms.

So even talking about it, it's like totally different experiences. So it's just great to be able to have an additional person to have those conversations with. It's hard to describe it to somebody who has no idea what you're talking about. 

Dr. Linda Bluestein: Yeah, I think that's true. If you've never lived in a body that's, like you said, more unpredictable, you know, some of the things that we experience, I think it is hard for us.

If you will, outsiders to really understand what it's, what it's like. So I think that that makes sense. And you're both [00:09:00] interns in the lab, right? So, uh, Delaney are there other interns in the lab? Is, is having EDS, is that something that they almost look for in interns or it's they'll take interns with EDS or without EDS or how does that work?

Delaney Kenney: Yeah, so Juvan was actually the first intern from our program to work in this lab. Um, and so before, like, in our internship program, there are usually, like, one or two people in a variety of different labs, um, but for our lab, it was really great that he got to have a chance last year to work in it because he had EDS and the program directors kind of told him about this, um, and for me, I actually, um, was, I found out I had EDS last year, and so I, from then on, I knew I wanted to do some sort of research the next summer that looked into EDS, and I actually found it through an article that was written about Jeevan in lab, so, um, both of us, I feel like it isn't really a big part of the internship program that we have this EDS lab, but it just so happened that because we had it and because we had reached out to the [00:10:00] program, they allowed us to perform such amazing research.

Dr. Linda Bluestein: Yeah, I've seen that article about Jeevan as well, and it was a really great article. I'd be curious, uh, Jeevan, what, what all else has come out of that article that 

Jeevan Mann: you were involved with? Yeah. So it was really a fantastic opportunity to come to the Gates Institute. I was actually a patient at Children's before I came here, and at the time I would have considered myself pre med, just interested in science and medicine in general.

And it was through the Children's Hospital that I realized they had a. program here over summer where interns could research. I had no idea I would be in Dr. Bilisova's lab. That wasn't even an idea of mine. I was just like, oh, like, you know, it'd be cool to actually be at the university where they study EDS, not even thinking that this was something that could happen.

And not only did the directors put me in contact with Dr. Bilisova, but she was gracious enough to accept me into her laboratory and give me a project about HEDS. So, uh, I myself don't have HEDS. I technically have [00:11:00] the EBP1 EDS. And just so everyone knows, I do actually know Dr. Bluestein from before this, because I was one of her, uh, consultants, I believe that.

So we do know each other a little bit before this. And I do also know one year guest Dr. Atwal is the one who diagnosed me with the EBP1 EDS, because as you know, there's less than 10 people or were less than 10 people in the literature. when I got diagnosed. But all I have to say, it's been amazing to be at a program where I not only study my disease, but I also got a chance to study with another amazing intern who understands what it's like day to day and as well as the molecular side of Ehlers Danlos Syndrome, which I feel like is just so rare.

There's not many labs studying it. 

Dr. Linda Bluestein: Yeah. And, and there's so much more that we need to know in order to really be able to, to help people. So the type that you have Jeevan then is that's considered classical like type two, correct? Correct. So Jeevan, um, can you tell us just [00:12:00] a little bit more about your research and the benefits that this, the 3d skin equivalent models have in comparison to mice models?

And um, you know, could that ever serve as a complete replacement for mouse work? 

Jeevan Mann: Yeah, so the greatest part about the 3D skins is we're able to do them on such a large scale. Uh, one of the big things we want to do is start doing drug testing eventually and trying to make therapeutic advancements in EDS.

And one of the best ways we can do that is by doing it on large replicates of HEDS patients. So we can really see how it works across the board, like, There's a lot of variation in HEDS and we want to see if the therapy works actually across all patients. So, if we did that with the mouse model, it would be extremely expensive, time consuming.

There's not many people in our lab who can even do the xenograft models. It's only like one or two. They're really expensive, time consuming. And also, there's other issues with the, there's a little bit of interaction between the mice physiology and the actual engraftment sometimes, so that's something we [00:13:00] also have to keep in mind.

But, uh, it's not a replacement for in vivo research, that being like the 3D skins. It's not a replacement for the mouse research, but what it allows us to do is identify targets and things of that nature so we can eventually take it to the mice after we have a good idea of what we want to pursue.

Because if we started with the mice, it would just be expensive, really long. This allows us to do this faster, more efficient, and hopefully we'll get to a solution faster. 

Dr. Linda Bluestein: So at some point, at least, and this is the hope, I guess, is that there would be different medications or other treatments that you could apply to the 3D skin equivalent models and see if that made changes in the skin, or could you explain a little bit more about how that would work.

Jeevan Mann: Yes, so we're trying to see if the extracellular matrix is actually being affected, just because that's where the collagen is and that's where we're seeing the phenotype of EDS, so we're hoping to see an actual rescue of phenotype back to the wild type, where you see really organized collagen compared to [00:14:00] the disorganized collagen of EDS patients.

So that would be what we want to see in a drug development, but And then we can actually assess that with 3D models. We can do electron microscopy images on them and we can do H& E staining, which just allows us to see the architecture of the skin, how the collagen is laid. So, it's just a great proxy by which we can actually assess.

Dr. Linda Bluestein: In terms of what you both, uh, being young people that are affected by these conditions, what are, um, I'll start with you, Delaney, what do you think are the most important things that we should be doing in this space? Like, so people like me who, you know, have a clinical practice, have a coaching practice that Jeevan was mentioning earlier, um, Um, and, and then also, you know, I do this podcast obviously, so I have a few different things that I have going on and serving on some boards and things like that, but like people like me and other people that are in this space, um, as young people that are doing research and things, what do you think would be the most important things for those of [00:15:00] us, um, also in this space to be focusing on?

Delaney Kenney: I would say just like, I mean, you're doing a great job of it, but getting the word out about EDS. I feel like so many professionals that I've talked to in the field and just lay people to like everybody, nobody knows what it is. Um, and so it's really hard to get diagnosed. It was something that took so many different years, um, so many different people telling me different things.

It's just great to get, have like. Resources to be able to go back to, to learn more about it, um, professionals in the field of communicating about it, communicating the new advancements about it. Um, our lab in particular, it's so great. Like I didn't even know that there was a possibility for a future without EDS, hopefully in the future, if everything goes to plan, um, with our centers for regenerative medicine, but.

Yeah, I feel like just the spreading of information is the most important thing because I feel like it is a rare disease, um, but HEDS especially I feel like is very underdiagnosed in the general population, um, so just more communication about the disease [00:16:00] in general I feel like is the most important thing and that's what's helped me the most.

Dr. Linda Bluestein: Yeah, I mean, as, um, as Jeevan was saying, like the classical like type 2, especially, I guess even classical like type 1 is, is very, very rare. Classical like type 2 is, I know I, I came across papers, like you said, like 9 people or 10 people at the time that those papers were published, so very, very small numbers.

But then there's the vascular type and the classical type, which are more common. And then there's the hypermobile type, which, you know, a lot of us think is probably actually not, in my opinion, it's not rare. Um, I think it's actually quite common depends, depends on what we're using for the criteria, of course, and that we have the 2017 international criteria that came out from the international consortium, which are already being revisited.

Appropriately so. And I talked to Laura Bloom about that a few episodes ago. I don't know if either of you had a chance to listen to that one, but, um, I was curious to see what she would [00:17:00] say to this. I asked her if she thought that hypermobile EDS was over diagnosed, under diagnosed, or both. And she said both.

And I think the same thing. I think there's so much confusion that I think there's some people that are, you know, making the diagnosis maybe without as much. Knowledge, and you kind of have to see a lot of people and touch a lot of people's skin and you know, to really know what you're looking for since those are clinical diagnoses under unlike what Jeevan is talking about for his type that is a actual genetic can be confirmed by genetics.

Right? So, so Jeevan, what do you think is the most important thing for, for us to be working on? 

Jeevan Mann: Honestly, I would say the same thing, there just needs to be more awareness about EDS as a disease. For me, the only reason that I got diagnosed is because I was very privileged to have a provider as a mother.

She's a PA and she noticed the signs very early. Uh, I had started having a lot of joint pain in high school, things of that nature, and she thought I had Marfan syndrome, so she, and I had a rheumatologist already, I have autoimmune [00:18:00] disorders that run in my family, I have an autoimmune disorder. And so I went to my rheumatologist, and his daughter has EDS, so he's like, oh, you seem like you have HEDS, so then I got a geneticist referral from that, and then I also got a different geneticist referral from my dermatologist because my skin started ripping when I was about 15 or 16.

So yeah. Yeah, but there is just, if I didn't have that community where people knew about EDS, I probably would not have been diagnosed. And that's also a big issue because even with how barbaric my variant is. I still require the diagnosis of HEDS to even further go on and get exome sequencing. So more knowledge just in general about EDS, and HEDS specifically is critical.

Delaney Kenney: Yeah, I'd agree with that, like, just to add on, the only reason that I got diagnosed too is because I went to a new physical therapist who she herself had HEDS, and she was like, oh, your symptoms sound exactly like this, you should go check it out, um, but nobody that I've ever gone to in, like, Any [00:19:00] sphere of the medical world that isn't specifically, like, doesn't have it themselves or know somebody that has it or studies it, they have never heard of it before.

So, like, even just the basic knowledge of knowing what it is and, like, not having patients like me have to actually spell it out for them to, like, Google it up real quick, um, would be so, so helpful in the future. 

Dr. Linda Bluestein: Yeah, and that's really interesting, um, because, you know, oftentimes, uh, Jeevan, I'm just thinking your story is really fascinating because, so you, you, and, and some of this obviously I know from outside conversations, so I, I'm waiting for you to share things so that I don't share something, 

Jeevan Mann: you 

Dr. Linda Bluestein: know, 

Jeevan Mann: inappropriately.

I had a very complicated medical history. I had a brain tumor when I was 13. And, uh, that was difficult because even then I was abnormal. No one knew I had a brain tumor for eight months. They thought I just had GI symptoms. And again, my mom was Actually, a non traditional PA, she went to medical school, she went to her medical [00:20:00] program after I was already born and I was in fourth grade when she went, so I started having symptoms in the seventh grade, so it was right when she finished her PA program, literally months, that I started getting my first symptoms of my brain tumor, and she was relentless in trying to figure out what was wrong with me because I was told there was anxiety, I was told that there was nothing wrong with me, and I was vomiting 20 times a day and no one knew what was wrong.

And my mom kept pulling me out of different specialists, and then we ended up going to one in Sacramento, Dr. Yinka Davies, and she was so fantastic, she communicated with my mom all the time, they went over like diagnostics, and they would read the tests together, come up with new ideas. She consulted her neurologist, or her neurosurgeon friend, which actually, he told us, oh, just get an MRI, like, just to check it off, it's probably nothing.

And then lo and behold, I had extreme hydrocephalus that was at an extremely critical state. He remarked that had I waited a little bit longer, it [00:21:00] probably would not have been a good prognosis for me. So, I had my first brain surgery done and I I still try to recognize my privilege because had I not had a provider as a mother, that probably would not have been the fate for me.

So, she not only helped me figure out my brain tumor the first time, she helped me get my EDS diagnosis and she also kept advocating for me along with the rest of my physicians. I've been very, very lucky. To have physicians who advocate for me and who believe me wholeheartedly and they do everything they can to help me.

And then, you know, arthritis, all of those other degenerative conditions started coming later in high school. So, I started having my first symptoms of POTS when I was 14, so my freshman year of high school. And I was an athlete, so I would be working out and then my vision would just go black. When I saw a cardiologist, I was told that my valve and my heart were ploppy.

That's an actual like quote, but other than that, like my blood pressure just seemed to be a little bit low. And then it just didn't seem like a point of concern. So we [00:22:00] just continued. And then I got subsequently worse to the point where I had to quit tennis. I had to quit all the things I loved because after my second brain surgery in high school, which was a revision of the first, I ended up becoming disabled for a period, about four months.

And the only reason I'm like walking, I'm able to do all these things again is because I had a fantastic physician in Novato who actually helped rehabilitate me and then she helped me do all my physical therapy and. Yeah. So that's where I am now. And she directed me to someone in Florida who could, she said could be of more help.

And then that Florida conversation happened to be more EDS diagnostics. So I've kind of been all over the country, but yeah, I've just been very lucky to have the support system that I do in order to even get diagnosed and to have all these other comorbidities diagnosed because it's just, it's so hard with the condition that has so many other conditions that are associated with it because it's so hard.

EDS is one of our problems, but that's not the only [00:23:00] thing. There's POTS, there's autoimmune conditions, inflammatory conditions. So it's just a very difficult disease to live with because you just don't know what's coming next. So that's why managing care is so critical because you have to have someone who's constantly checking on you.

Like I get an EKG yearly and I get like Ultrasound as well, just to make sure that I'm doing okay, because I had arrhythmias as well, which I had to get ablated, but there's just so much that's not known about this disease that it is, yeah, very important that we continue to research it and try to understand the links.

Dr. Linda Bluestein: Wow, and it is so hard because I love how people often use the example of a broken leg. I had a family member recently with a broken leg and I would have to say that their care was not good, even with a broken leg. So I use that example a lot of like, Well, you break your leg and they fix it and all as well.

No, not necessarily. So, um, you know, it's, [00:24:00] it's way, way harder, of course, with these conditions because they are so much more heterogeneous and, um, your story is really fascinating because of all the different things that you went through. And I feel like a lot of times, especially, you know, like, as you're saying Jeevan about the Uh, seeing the rheumatologist and being diagnosed, you said you were diagnosed with an autoimmune condition, correct?

Jeevan Mann: Yes, I have celiac disease. I also got diagnosed with mast cell at one point, and then when I was a kid, I had a sonophilic esophagitis. I also had, uh, extremely bad allergies. Out of the things I was tested for, I tested severe for about 30 or 40 of them, which was most of the panel, and I lived in a small farm town, so that was not great for me.

I had to get allergy shots for five years, severe asthma because of that. Eczema, you know, all of the above, but it's interesting seeing that these conditions are actually highly comorbid with EDS and funny enough, my mom has HEDS and these things also [00:25:00] run in her family. So it's just a very interesting dichotomy to see.

Dr. Linda Bluestein: Yeah, that's actually, I'm so glad that you mentioned that because, um, having different forms of EDS within the same family, super interesting. So you mentioned that you have the whole genome sequencing, correct? Correct. Okay. So, so then have your parents been, uh, had whole genome sequencing as well to see if they have the AABP1, um, genetic marker?

Jeevan Mann: Yes. It sounds like your mom. 

Dr. Linda Bluestein: Okay. 

Jeevan Mann: Yes. But it's really funny because only the women in her family are affected. So my grandmother, some of my aunts. But there's still just a lot unknown about this disease. And it's interesting because her presentation is completely different than mine. And she's a lot more hypermobile than me, but my joints slip out of their sockets.

And I have arthritis at 19 or I got arthritis at 19 and she got it later on, but hers is also [00:26:00] HEDS. I mean, she has many of the symptoms, but just different presentation than mine. Ours is located in different places. Like my worst areas are very different than hers. But There's a big spectrum even among HEDS patients, so that's to be expected.

Dr. Linda Bluestein: And even within families, that's the thing that I think is, is mind boggling for a lot of people. It's just like, wait, but we're genetically related to each other, so, I mean, you can have new, new mutations, right, de novo mutations, but still, um, with genetic conditions, you would expect to see more similarities.

Um, Delaney, what about you and other family members, similarities or differences? 

Delaney Kenney: Yeah, so I'm actually really different from the rest of my family, too. Um, my sister recently got diagnosed with HEDS after I did, and we think my dad is the one that gave it to us, but he still has yet to be diagnosed. Um, but the three of us all have completely different symptoms.

Um, my sisters are more of the inflammatory sort, and [00:27:00] mine, I have, I feel like I have so many more symptoms than either my sister or my dad. I like when I was growing up, it was more of. The, I played three sports growing up, and so it was more like getting injured every single year. I've gone to PT for different injuries since freshman year of high school, um, and then when I got to college, I'd say it's more so the dysautonomia symptoms, um, the struggling with dizziness, with lightheadedness.

I get like stress induced sicknesses where I like will stand up and then my vision will immediately go black and I'll like be bedridden for five days. Um, and I feel like I get different symptoms like every couple of months to like last fall was the first time I started experiencing brain fog. And now when I have flare ups, I get brain fog every time.

Um, but we're still trying to figure out kind of like what each of our family members has because it's been so recently that any of us has gotten diagnosed. I was only diagnosed last May and I was the first one to get diagnosed in my family. So it's still very much a [00:28:00] learning process, but it was very surprising.

Learning that I had HEDS and that it was a genetic condition because me and my sister and my dad all experience it so differently. We never thought any of our symptoms would have been related 

Dr. Linda Bluestein: to the same condition. Yeah, that's interesting. And I've had patients where You know, I have the patient and then, uh, I have this one family that I'm thinking of.

So I take care of grandpa, and then I take care of a mom, and then I take care of multiple kids in that family. And it is interesting because they're different from each other, but a thing that kind of fits with what both of you were saying, I think a bit, is that the older generations often are doing better, relatively speaking, than the younger generations.

And I don't know how much of that is due to environmental factors. factors because we have so much more in our environment that we didn't used to have, in terms of exposure to pesticides and plastics and other things that are activating our mast cells [00:29:00] and causing problems like that. All right. We're going to take a quick break.

And when we come back, we are going to talk more about the Gates Institute and what your career goals are. So we'll be right back.

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Okay, we're back with Jeevan and Delaney. So Jeevan, um, if I was cutting you off, I want you to, I want you to finish the thought of what you were about to say. Otherwise, I have a question for you. Did I, did you have something that you wanted to add in there? 

Jeevan Mann: I was just saying it's really interesting to see the environmental impact on EDS as well just because I went to UC Davis and one of the classes that I took was behavioral epigenetics and that was one of the main focuses of the class is the new world that we live in and how epigenetic landmarks can be actually changed and moved as like not only as you [00:31:00] move through your lifetime but also what you're surrounded with.

So it's interesting to see as we move into this new and modern world to see how Things that we might think as revolutionary now, how they actually might affect us in the future. 

Dr. Linda Bluestein: Yeah. And, and I think we often forget that a lot of the things have not been around forever, and we don't know necessarily what the impacts are because it takes time and it takes doing research and to really get that kind of information.

Okay, so Jeevan, you were sharing, um, your really interesting journey that you've been on and I'm sure you've gotten information from a number of different sources about EDS, but can you tell us some more about where you have felt that it's been most helpful for you to get information about EDS? 

Jeevan Mann: Yeah, of course.

So this is a little bit multi pronged because before I had a BP1 EDS, I had HEDS. So, uh, we learned a lot from my first doctor, but I had a lot of specialists along the way who [00:32:00] helped me and they gave us more resources such as the Ehlers Danlos Society. And then my dad has been one of my biggest champions.

Uh, when I was bedridden, he decided to take all the research onto himself, but he's in real estate. He doesn't have a medical background, He decided to go look through the literature, found people like yourself, specialists in the field to make podcasts and to spread awareness about this type of disorder and he would just give me papers, give me anything that could actually help and he would try out the most random things.

It's It's from supplements to medications that we could possibly try because I understand it's probably terrible to see family members going through this or but it's not often looked at how it affects families and things like that. So, yeah, I mean, I would say at the end, the biggest resource has been.

Ehlers Danlos Society and influencers such as yourself who really help us figure out this disease when there's really not where nowhere else to look to. 

Dr. Linda Bluestein: Yeah. Well, I'm, I'm glad that the, that the podcast has been helpful because [00:33:00] that's, that's the goal, getting accessible information to, to people so that they can learn as much as possible to help themselves and their loved ones.

Cause you're right. It's a, it's a fit. The whole family is affected. Everyone around that. Okay, so Delaney, um, tell us more about your experience as a summer intern, um, with the Gates Institute. 

Delaney Kenney: Yeah, so I've absolutely loved working at the Gates Institute. It's been my favorite internship program that I've been a part of.

Um, I feel like what makes it very special, um, with is just how much everybody is willing to teach me and how much everybody is willing to help out. I'm actually a neuroscience major. So this is my first time working in a biology lab and I found it super rewarding to get to have my first biology, biology research experience be on something that impacts my life and so many others lives so much.

Um, everyone in my lab, in our lab I guess, [00:34:00] has been so eager to help me out with learning lab techniques and even just like talking with me about my own symptoms and what they've read in the literature or even discovered in the lab themselves and how it relates to that. Um, and even just like before I came to Gates, I'd say I was told ever since I got diagnosed that there's no treatment available.

All you could do is like possibly manage your chronic pain or take vitamins and go to physical therapy and that's the best you could do. Um, but being at Gates, it's the first time I had hope for a future without EDS, um, and actually got to see what it looks like, people working towards different treatments available in the future and understanding the molecular background behind HEDS.

Um, so it's just been an amazing experience overall, and our program directors also give us the chance to attend a variety of seminars, um, where leaders in different fields get to talk about their research, panels talking about how to get into grad school or med school, what's the best option for you, and just [00:35:00] telling us about their path to their career, um, which always is usually a winding path.

Nobody really knows what they're about to do when they get right out of college, so just the collectives. Um, of all of that, all of the great resources that we've been given has been so amazing. 

Dr. Linda Bluestein: And how big is the lab in terms of like number of people and or number of projects that are going on at any given time?

Jeevan Mann: We have, uh, an unusually large lab. We have anywhere from like 20 to 25 people, somewhere in that range. But, uh, there's a lot of different projects going on. We are a dermatology lab and we also do specialize in iPSCs, which are induced pluripotent stem cells. So that's another focus of our research. And Delaney could tell you more about that than I could, but, uh, yeah, so we do have a lot of different projects that are constantly going on, uh, mostly in the dermatological field.

So like with recessive dystrophic epiduralosis bullosa, that's one disease that we're also studying inside the laboratory, also known as butterfly skin disease. So, [00:36:00] there's a lot of different projects going on, but, uh, mainly they are dermatologic conditions. 

Dr. Linda Bluestein: Okay. Delaney, do you want to tell us more about, about what you're doing specifically?

Delaney Kenney: Absolutely. Um, so my project in the lab this summer was reprogramming hypermobile EDS patients fibroblasts into iPSCs. Um, just to create a renewable biorepository of patient samples. So, I worked on a control line and a patient sample line, and I was able to reprogram the fibroblasts into the iPSCs. And then I did a variety of characterization methods such as karyotyping analysis and immunofluorescence staining, um, to make sure that I did indeed turn them into iPSCs.

And then, um, After that is where all of the model building, the potential future drug development and everything that Jeevan is working on comes after that. So I was kind of on the front end of just making that by repository possible. 

Dr. Linda Bluestein: All right. And, uh, both of you obviously have done some [00:37:00] incredible things already in your, in your young lives.

Um, Jeevan, let's start with you for this one. How has life with chronic illness changed your career goals? 

Jeevan Mann: Oh, that's a tough one. So, uh, you know, I always loved science as a kid. I was probably one of the only 10 year olds that you knew that loved embryology, used to watch YouTube videos about it all day long.

So, I knew that I wanted to do something in the science field, but uh, once I had my brain tumor, I really realized the impact that being in medicine can make on a person because being a physician is more than just helping people with diagnoses. It's really changing their lives and me getting diagnosed with my brain tumor not only saved me, but It changed the entire course of my life.

It changed the way that I look at things. It changed the way that I appreciate the world. When you realize really how fickle everything is, it really changes you as a person and I wanted to be that supportive physician for other people. So, from then on, I was pre med, but it was coming to the Gates Institute and their emphasis on translated medicine that I really realized that one of [00:38:00] the greatest impacts that can make is not only In the clinic, but also in the laboratory, especially with such a rare disease like this, I decided that it would be great for me to also get a PhD because we still need a lot of research in the basic laboratory for EDS as well as the clinical laboratory.

So my life goal is to now get an MD PhD and work on these rare conditions. 

Dr. Linda Bluestein: Fabulous. And is that something that you'd be applying for in the near future, do you think, or is 

Jeevan Mann: I guess I'd hope so. I graduated college a little bit fast, so I'm taking a little bit of a break right now, just researching, trying to get my hours up to be a competitive applicant.

Um, yeah, so I know that that's my goal. I am going to do that, whether I do them separately or together, but that's where I eventually want to end up. 

Dr. Linda Bluestein: Yeah, I think getting the MD PhD is very, very smart. I don't think I really thought that much about it back when I was applying to med school. And I was not as young as you, but I did graduate from [00:39:00] college early.

I graduated in three years instead of four. So I did, I was younger when I started med school. Um, and I just was in such a hurry to, I don't know, to finish for whatever reason. And of course, if you do the MD PhD, it takes even longer. So, um, so, but I think that would be absolutely amazing. And I would sure think your application would be quite strong.

So, but, uh, yeah, no, I would, I would definitely think so. So, okay. And, um, Delaney, what about you? How has life with chronic illness changed your career 

Delaney Kenney: goals? Yeah. So before being diagnosed with EDS, I had previous experience studying child development in a variety of labs, but I couldn't really find a career choice or like a specific niche interest in the field that I knew I was super passionate about and wanted to pursue.

Um, but now knowing that I do have Ehlers Danlos Syndrome and coming to the Gates Institute, I've had the chance to study something that has directly has the power to improve my life and the lives of others. Um, and so in the future, I [00:40:00] know that I want to continue working in this field. I'm not really sure if I'm going to do a grad school route or a med school route, um, but I know that I found my passion in working with HEDS.

And so I want to continue working to help elucidate the genetic mechanisms behind it and also to identify different symptoms associated with it and comorbidities because those have impacted my life quite a lot. Um, I do want to tie in my original interest with child development because I am very passionate about that too.

Um, and I just overall like to research to see how EDS manifests in different stages in your life as you grow up. Um, and also help with my research to lower the average age of diagnosis, because I know it takes people like decades to get a diagnosis. So kind of working in more of like the child development side of EDS, I feel like would be a really great career path, but again, not really sure.

I don't know what exactly my career choice would be, but I know what area I want to study 

Dr. Linda Bluestein: in. And you had mentioned earlier about accommodations. [00:41:00] Yes. And there are probably some people that heard that and went, Oh, well, I wish I could get accommodations. Um, cause that's something that of course is, is very challenging.

Do you have any advice for people who feel like they do need accommodations, but they've been struggling to get them? 

Delaney Kenney: Yeah, so I struggled for quite some time because when I got into college, um, I, that was when I first started experiencing dysautonomia symptoms and like stress related illnesses. And I had always had the mentality of like, Being in competitive youth sports and a competitive academic environment to just kind of tough it out and like everybody deals with these things so you should just always give a hundred percent all the time.

And so I feel like I didn't really advocate for myself a lot because I was like, Oh, everybody deals with this. It's just the normal thing going to college. Um, but once I started advocating for myself and trying to go to different physical therapists, like I would switch doctors if one wasn't working instead of sticking with them for three years just hoping things would get better.

Um, so just like [00:42:00] trusting in myself more and knowing that I know myself better than others know me. I feel like that really helped me. I was able, was like the key factor in me getting a diagnosis and when I got a diagnosis that was the best thing to help me with accommodations because I'd get tested for a variety of things like at the nurse's office and I'd always get stress sicknesses during finals or midterm season and I'd always test negative for everything so they're like oh you're just faking it you don't want to take the midterms, um, but Yeah, I'd say advocating for myself has been the biggest thing.

Like, never really giving up on the fact that you know yourself better than anybody else does. So just trying to find. Who is best to like treat you and to leave you in these different types of environments really helped me get the accommodations that I needed. Jeevan, 

Dr. Linda Bluestein: do you have thoughts about getting accommodations?

Jeevan Mann: So I will preface this with the fact that I do have a little bit of privilege since tumors tend to be a buzzword. People don't ask questions after you put that in your prior history. It was very It wasn't very difficult [00:43:00] for me to get accommodations for that, uh, but I do know that it is difficult for many people to get accommodations.

So, yeah, it's definitely an issue that requires a lot more just looking into and a lot more focus on that subject. But, yeah, accommodations were the biggest thing for me that allowed me to graduate early or even graduate at all. I couldn't really attend my classes and I was lucky to attend UC Davis and they had lecture captured for all of their courses, so the rooms automatically recorded the classes and then they would upload it online and I couldn't really leave my room at some point between my winter quarter at UC Davis because I spent a year there and uh, yeah, I had degenerative arthritis that quarter and I got a heart arrhythmia, so I really couldn't leave my room too much.

Just because my heart rate was in like the 200s and I was not well enough to leave my room, so I just watched my lectures online and I would go in only to take the exams at the accommodating test center and then immediately back home. But [00:44:00] that's what my college career is mostly like. The accommodations made one of the biggest differences for me and yeah, I would say also like Delaney said, advocating for yourself.

Because if a teacher tries to, or anyone tries to deny you accommodations, it's important you speak up and try to really express how it affects you. 

Delaney Kenney: Yeah, to add on to that, I'd say a big thing is not really playing down what symptoms that you have. Um, even if you don't think it's a big deal or you don't want to make a big deal out of it, just like, tell them everything that you've been going through, whoever you're trying to get accommodations from.

So I feel like even if it takes a while for it to happen, at least if people understand it better, they're more likely to give it to you. Um, and yeah, just don't play it down and keep advocating for yourself. And, 

Dr. Linda Bluestein: and probably documentation is very important as well, I would think, um, you know, so I think that's really important and, and it's, I think a common thing that we, we, you know, kind of gaslight ourselves.

We, like you said, Delaney, we don't trust ourselves [00:45:00] sometimes and we minimize our own symptoms and so often we've We're used to not feeling good, and so we've adapted to that, and, um, so I think those are all really important points. Delaney, you talked a little bit about, um, getting your diagnosis and that you, one of the things that you want is for people to get a diagnosis sooner.

Um, do you have any suggestions for someone who is struggling to get a diagnosis? 

Delaney Kenney: Um, I would say just get a variety of opinions. That has been the most important thing for me. Because when I was growing up and going to my regular doctors and physical therapists, um, things that they would do to tell me to like do my exercises or like stretch more, which was never really good for me.

Um, I just kind of assumed that they, I mean, they are professionals. So I was like, they know what they're talking about. Like they're telling me the right thing to do. It might just be I'm doing it wrong. Like I was kind of blaming myself more than that. Oh, maybe there's something else going on here. Um, so I'd say [00:46:00] again, more so just trusting yourself and knowing your own body, um, and getting a variety of opinions because I had to go to probably four or five different physical therapists before I saw one that actually was making things get better.

And she happened to have HEDS herself. Um, so, yeah, just don't stay, like, stagnant in your chronic illness, like, don't think that it's normal when you know that it isn't, um, just because other people, like, don't really think that you might have a rare disease. Um, you definitely could, and you can definitely find people who will believe you and who do know more information about it, so.

Definitely just get more opinions and keep advocating for yourself if you know that something is up. 

Dr. Linda Bluestein: I think that's another problem with our medical education is, you know, the zebra is the symbol of VDS, right? And it's that way because when in medical school, you learn if you hear hoof beats, think horses, not zebras.

But the other problem is if you've been to the [00:47:00] doctor often enough and there's enough So mystery still surrounding what's zebras and we should probably start thinking about zebras sooner than later. I mean, you know, Jeevan is a great example of that. Um, you know, rare things are not non existent, they're just less common, but a lot of those things we think are less common because we just don't do the tests often enough.

So it'd be interesting to see if like everyone in the world or we had some very, very large sample. with that, um, phenotype, that clinical phenotype of the classical like to type two, um, you know, what, what percentage of people with that phenotype would then have test positive if you did whole genome sequencing would be interesting.

Delaney Kenney: I think another thing also with receiving diagnosis, because you had talked about before, like the heterogeneous presentations of HEDS. Um, is to, if you're going to any sort of medical professional, tell them all the symptoms you have, not just the ones that you're there for [00:48:00] them for, like when I was being treated at physical therapy, I was mostly just talking about my athletic injuries, but then I happened to mention my dysautonomia symptoms and like dizziness and lightheadedness.

Just because I had just experienced it recently, but I never thought the two of them were aligned in any way. And also like I'd have dental procedures and Novocaine would never work on me, but I never thought that was related to like spraining my ankle. Um, but just like talking about all of the health issues that you faced.

And anything in your life, even if you don't think that it's important to give the whole picture because like you might just be going to a physical therapist or like a dentist or something. Um, I feel like if people have that whole picture and not just a specific lane of what you're there to see them for, then I feel like that definitely helped me get a diagnosis.

Dr. Linda Bluestein: Yeah, that's definitely something that I advise people on a lot if I'm seeing them as a, as a coaching client too, is how to organize their information in a way such that it makes it easier for the clinician [00:49:00] to identify what's going on. So like you're describing, Yeah. Including more of your symptoms, maybe on a, on a document, like a word document or something that you might create broken down by system.

So you might have GI, GU, neurologic, constitutional, which would be like fatigue, um, you know, hot or cold intolerance, things like that. So, yeah, I think that's a very important. And then also I recommend usually that people have a few documents. So one is having a, that, like by category and then you could just update that periodically and take it with you to appointments and have it by system and then, um, the other would be to have a timeline that is, uh, you know, organized and but also as concise as possible.

So, like, You know, once you, once you get a diagnosis, you can include that diagnosis, but you don't necessarily need to include like everything leading up to that that's not pertinent anymore. So, I think that, um, yeah, those kinds of things and that kind of preparation can really serve you for a lot of [00:50:00] appointments and, uh, make the clinician's job easier.

Delaney Kenney: Definitely. 

Dr. Linda Bluestein: Okay. Um, I want to ask both of you, and this time I'm going to start with Jeevan, what advice would you give if you could speak with your past self? If 

Jeevan Mann: I could speak with my past self, I would definitely say, don't overexert yourself. I put too much pressure on myself, even as an athlete, to keep pushing myself.

It's common rhetoric in sports that like, Oh, if you want to be the best, you push yourself past your limits. That's that's not true for EDS. You cannot push yourself past your limits. You're just going to hurt yourself more and you're not going to recover properly. And I did that for years without thinking anything was wrong with it.

And I just kept degrading and degrading the biggest jump in the quality of life that I've had is when I learned to say no to things. And when I learned what fits best for me, so I know that I'm not going to be running or jumping those sort of things. I just don't do any more because. Transcribed They cause more damage than they do good for me.

And although I love running, although I love a lot of these sports, I've just [00:51:00] learned to take a more laid back approach just to try to save myself in a lot of instances. So definitely don't be afraid to say no to yourself even, or other people, or if it's going to be something that pushes you out of your comfort zone in terms of mobility or even regularly.

And yeah, I would say that. 

Dr. Linda Bluestein: What about you, Delaney? 

Delaney Kenney: Yeah, I definitely agree with Jeevan. I feel like it's really hard growing up in those competitive environments not to just tough it out. Um, but I feel like that just, it just never makes things better. Like when I was growing up playing soccer, I would be doing like conditioning drills and my vision would get really fuzzy and I'd feel really dizzy.

But I thought that was just part of the process of playing soccer. And it wasn't until I like, Actually talk to people about it that I realized that nobody else was really experiencing the things that I was. Um, another example of this is like, my dental surgery is like, I thought you were supposed to feel pain when you got dental surgeries.

I didn't realize novocaine was like supposed to [00:52:00] work that well. Um, so only when I spoke up and I was like, Talk to my family about it. They're like, yeah, you should never be experiencing that. So now I have to get it like Reapplied like every probably 30 minutes 20 minutes when I get a procedure done now Um, so definitely don't play down your symptoms because you've been told to tough it out because a lot of times Toughing it out doesn't really do much for you and you can get a lot more Um, resources and accommodations and everything, if you actually speak up and like Steven said, learn to say no to things and learn to say, oh, this doesn't feel right, um, and I know I'm not feeling good.

Um, I'd say another thing, kind of like I talked about before, is just get a variety of opinions, um, and don't just stay like content where you are when you know that you're not feeling good, um, because you probably do have better options out there elsewhere. Okay. Um, and yeah, just advocate for yourself more and again, don't try to play down what you're [00:53:00] experiencing.

Dr. Linda Bluestein: So, so both of you grew up as athletes and I grew up as a dancer, but you know, an, an artistic athlete, so athlete, but, but a different type. And I definitely, I would say when I was, you know, around your ages, um, definitely went through what you're, what you're describing. And then, but then later in my life, I had to figure out where was that point at which I kind of did have to push myself a little bit.

My, my husband actually gave me this watch a number of years ago and on the box, it said, today's a great day to set a record. And I was so mad at him. I was You've got to be kidding me. I'm not, I'm not, I can barely take the dog for a walk, much less set a record. And I, I was at a point though, where I needed to start monitoring my activity and slowly over the past, you know, decade plus, I've been able to walk more and now go on hikes.

And, you know, we're in Colorado right now, all of us, right? So we're at altitude as well, um, and so I [00:54:00] think it's also hard because at different points in your life, maybe you have to sometimes find that place of, you know, where do I need to hold myself back? And then where do I need to push myself a little bit?

Um, I talked to Alyssa Sealy, who is a, um, triathlete, Paralympic triathlete, and I don't remember what number that episode was, but she talked about that, like kind of knowing Push yourself a little bit and versus when to hold back. Do either of you have thoughts about that? 

Delaney Kenney: Yeah. I'd say for me, um, when the holding back started was probably like mid high school, like I grew up playing three sports and then I cut it down to one sport and now in college I play on the club soccer team at my school.

Um, but I'd say, well, Yeah, athleticism I feel like is a very big important part of my life and something that I just love doing so even though I know that sometimes like I get injured really easily, it's something that I know does make my quality of life better [00:55:00] just like exercising and being out there with my team, um, so I'd say like one of the things when I got diagnosed with EDS was just like, don't give into the fear of just like, oh, you're going to get hurt all the time.

You're, this is going to make your life worse. Like just stop everything that you're doing athletics wise. Um, so I'd say like, try to find the balance between. Continuing to do what you like and like, I love going on walks now instead of like doing my conditioning training for like my varsity teams in high school.

Um, so just striking that balance between not giving up things that you love doing and continuing to exercise and get out there if you can do that. Um, but even if it's at a lower level, like that's okay to do it at that lower level. Just don't push yourself past your limits, but also don't get into the fear of like having a chronic illness, um, because it doesn't mean that your whole life has to stop if you have it.

You just have to find ways to manage it and balance. The amount of exertion you put out every day. 

Dr. Linda Bluestein: Yeah. And that [00:56:00] reminds me of something that I often tell people. It's the question. Isn't so much like, what can you do today, but what can you do the next day? So if you do, you know, if I take the dog for a walk and you know, maybe I'm a little tired later on that day, but if I can do it again the next day, then that probably was a Relatively okay amount of movement.

I like to use the word movement rather than exercise, because there are both of you are still very physically active, which is which is great. But a lot of people for a wide variety of reasons end up, you know, really not moving very much. And then we get a lot of atrophy and a lot of other things that can really affect you.

So, I, I often give people that example of like, well, what can you, can you do what you did again the next day? Now, of course, if you're really training your muscles hard and you're doing, you know, you're working with an athletic trainer or something, and you're trying to, you know, safely increase the load to get some, that muscle [00:57:00] hypertrophy, then you're not going to do that the next day, right?

You're, that's, that's not how that works. But I think with. Things like going for a walk or something. That's a good measure. Um, what about you, Jeevan? Have you experienced anything like that? 

Jeevan Mann: Yeah. So definitely with my physical therapy and doing that, getting up to the level of being able to walk again, that was one of my biggest things.

And it takes maintenance definitely to keep myself at that level. Like I found out recently that I can do pickleball. I can't play tennis or basketball. Uh, I can't play tennis anymore, unfortunately. I can hit around, but I can't run for the ball. There's just, I can't serve. Those are just things that I'm okay with, but pickleball is a lot easier on the body as long as I'm not running for the ball there.

Uh, I'm completely okay with that. So, that's also something that I realized that I can do comfortably. But it's, for me, mostly it's keeping up with maintenance. I tend, I'm the type of person that tends to push myself and I don't usually realize I'm doing it until the damage has already been done. So, for me, I just tend to take a [00:58:00] more conservative approach because I do more walking in lab, I do maintenance to keep up with it, but that's just things I already do and every person has to have a different type of routine in order to either push themselves a little more if they're not doing enough or hold themselves a little back like I have to.

Like, I actually joined a rowing team at some point because I still didn't want to believe I had EDS. So, I was like, oh, I'll be fine. It's like. It's not impact sport, it'll be okay. And I ended up really injuring myself and I had to take multiple days off a week. I really couldn't leave my bed, but it's just things that we sort of learn over time on how to either hold ourselves back or push ourselves a little more.

I think it's a lot of trial and error, unfortunately. 

Delaney Kenney: Yeah, and finding that balance I think is the most important thing. 

Dr. Linda Bluestein: Yeah. Yeah. And I'm glad that you both mentioned too about working with a physical therapist because to me that's like such an important thing is for them to understand, are you the kind of person and are you in the place of your life where you need to be held back more or do you need to be kind of, you know, isolated?

Again, [00:59:00] safely, carefully, like, encouraged to move. 'cause, 'cause kinesia phobia is a very real thing. Like I had big time kinesia phobia when I was, uh, when I wrote my first article about pain management in EDS, um, in 2017, and I was doing research for it, and I, and I like, came across kinesia phobia and I was like, oh my gosh, that is exactly what I have.

I was like so afraid to move because everything that I did hurt and I was doing the boomer bust, like, you know, I would go from nothing to like doing too much and hurting myself and then back to doing nothing. Okay. So I like to end every episode with a hypermobility hack. So we're going to start with Delaney.

Um, you could probably give us lots of hypermobility hacks, but why don't you pick one hypermobility, one or two? Two hypermobility hacks that you think that the audience would like to hear about. 

Delaney Kenney: Um, I mean, I feel like I've kind of said this throughout the podcast, but just making sure to know your limits and not push yourself too much.

I know we talked about also recently being able to push yourself if you [01:00:00] find you're in a place that of stagnation and you might have like a fear of hurting yourself um but striking that balance between knowing what you can and can't do I feel like is a really important thing especially for people who just got diagnosed who are around our age I feel like we're at this place in life where we're just expected to like go off and do so many great things and build your resume and continue to move around everywhere but knowing that it's okay sometimes to just like Preserve your body and your health and making that a priority.

I feel like it's a very important thing. Um, and another quick thing is just also to like, if you have any symptoms, just like look to see if they might be related to EDS or like, if there's something that you feel is a little wrong in your body, like don't really push it down, like kind of reach out to people, reach out to professionals in the field to see if that's something that might be related to it.

Um, with my example with Novocaine, like I just, Never thought it could be related to EDS and then I looked it up online and it was like, Oh, that's, that's one of the comorbidities with it. And I just [01:01:00] never would have known that it was related to it. So continue to research, um, everything about your condition, if new symptoms pop up and also just know your limits and find a 

Dr. Linda Bluestein: good balance for your life.

And in terms of new symptoms popping up too, I think it's also important to like the way Jeevan was explaining before about all of the different things that he's had going on, like there's a saying, uh, a person is entitled to as many diseases as they damn well please. So it may or may not be related to EDS, right?

You could have something new pop up that maybe, maybe it's related. But maybe it's not. So, um, you want, yeah, you don't want to limit your thinking in that way. And, or your healthcare team. Um, you know, you want to keep, you want to start with a bigger scope, I guess, and then, and then narrow it down. So, okay.

Jeevan, do you have a hypermobility hack for us? 

Jeevan Mann: I would say dietary like hacks. So I mean, I like to eat salt. That was one of the things my cardiologist told me [01:02:00] that helps a lot with my dysautonomia symptoms and then also hydrating, making sure that I'm taking care of myself eating. I know it's a lot really hard sometimes when you have like gastrointestinal issues like I do as well, but uh, sometimes I get like a fear of eating because I don't want to.

Either my heart rate to shoot up or I don't want to start throwing up and things of that nature. So, um, one thing is to try to either find out what works for you, the routine. And also, I think finding community has been one of the biggest helps or one of the biggest aids for me because, I mean, when I was in high school, I knew I had these things, but I didn't want anyone to look at me differently.

No one knew. And, uh, yeah, I really started improving once I started talking to people and really taking in a variety of opinions. Like Delaney said, Binding Community is just fantastic because they always have random things that work for them, like icing, heating. I mean, salt is one of them that's also very big in the community.

So it's just, there's a lot of knowledge and there's a wealth of things you [01:03:00] can learn from other people. 

Dr. Linda Bluestein: Okay. Well, thank you so much to both of you for joining me today. And before we wrap up, um, I guess I would like for each of you to, um, we'll start with Delaney. Um, if you could tell me, first of all, if there's anything special that you're up to that we should know about, and then also where we can find out more about you.

Delaney Kenney: Yeah, so we actually just did our poster symposium for our internship the other day, so that's about wrapping up, um, and I'm heading into my senior high school, um, sorry, college, and I'm really excited to get started on my thesis and then figure out my next steps. I'll probably take a gap year or two, so my path is a little bit undecided right now, um, but for my socials, I'd say my Instagram is Delaney underscore Kenney, both with an E Y.

Um, yeah. Thank you so much for having me on your podcast. 

Dr. Linda Bluestein: Absolutely. What about you Jivan? 

Jeevan Mann: Uh, for me, you know, I'm still keeping up with my nonprofit [01:04:00] work. We've raised money right now and we're just working on trying to get into schools and getting more volunteers. So that's going on right now, and then I'm still ironing out my plans for researching after this.

So hopefully I'll be researching full-time somewhere soon. And then you can find me on social media, on Instagram, or either LinkedIn. I believe it's j even man. Oh three. 

Dr. Linda Bluestein: I don't think you mentioned your non profit before, so can you tell us about that really briefly? 

Jeevan Mann: Yeah, no problem. So I have a non profit called Medical Inspiration, Inc.

And what it is, is just a non profit that I started about a year ago, and what we're doing is we're trying to really help the disability community by care drives, and then eventually we want to start helping with disability. by like helping people get disabilities and like educating them but right now so we raised the money we raised about thirteen thousand dollars and now that we have that we're now working on getting volunteers and getting into schools to actually start making this difference but um non profits they're very time consuming and they take a lot of effort so it takes a long time [01:05:00] unfortunately i thought that Getting into it, just be boom, boom, boom.

But there's a lot of regulatory things that we need to do. So just working on doing that and just hired a social media manager. So he's starting now. He just graduated from Berkeley. So he'll be now getting into that and setting our roots into schools, hopefully soon. 

Dr. Linda Bluestein: Wow, that's exciting. 

Jeevan Mann: It is. 

Dr. Linda Bluestein: Amazing.

Well, thank you again so much for, to both of you for coming on the podcast and sharing this fabulous work that you're doing and sharing your experiences. And I'm just really grateful to both of you. 

Jeevan Mann: Thank you so much. so 

Dr. Linda Bluestein: much.

Well, it was so great chatting with Delaney and Jeevan and I hope that you learned as much as I did about how young people like this are going through life and making accommodations, asking for accommodations, adapting what they're doing and you know, really trying to live the best that they [01:06:00] can with their symptoms while also in the case of these two young people like researching their conditions and doing some really amazing, amazing scientific work.

So, so much. I hope that you're as inspired as I am by listening to this conversation and I want to thank you for listening to this week's episode of the Bendy Bodies podcast. I hope you found it empowering and informative. If you loved what you learned, follow the Bendy Bodies podcast on your favorite podcast player and subscribe on YouTube where full video episodes are released each week.

each week at Bendy Bodies Podcast. Visit BendyBodiesPodcast. com to access transcripts, show notes, or leave us a message. Help spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. If you'd like to meet with me one on one, check out the available options on the services page on my website at hypermobilitymd.

com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, or LinkedIn, all with the handle HypermobilityMD. [01:07:00] You can find Human Content, my producing team, at Human Content Pods on TikTok and Instagram. To learn about the Bendy Body's Program Disclaimer and Ethics Policy, Submission verification and licensing terms and HIPAA release terms or to reach out with any questions, visit bendybodiespodcast.

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