Spotting Hypermobile EDS Early In Kids And Teens: With Dr. Sarah Cohen-Solomon

Why The Flexible Kid Gets Missed

SPEAKER_01

0:00

What if the flexible kid everyone praises is actually the one being missed? In this episode, we sit down with Dr. Sarah Cohen Solomon, a pediatric specialist in hypermobile EDS, who's not just treating these complex conditions, she's lived them. From years of being dismissed and misdiagnosed to now helping kids get answers earlier, she's bringing a perspective most doctors simply can't. We're diving into what hypermobility really is and what it isn't. The early signs parents and providers often overlook, the surprising connection to endometriosis and what it actually takes to support kids living with chronic pain. If you've ever been told it's just growing pains or it's all in your head, this conversation will change the way you see everything. So stick around. Welcome to Indobattery, where I share my journey with endometriosis and chronic illness while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own, believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience, and hope. From personal experiences to expert insights. After years of navigating chronic pain, misdiagnoses, and medical gaslighting herself, Dr. Cohen Solomon now combines clinical expertise with lived experience to deliver truly whole person care. Her work is reshaping how we understand and treat complex, often overlooked conditions, especially in kids who are too often dismissed. Please help me in welcoming Dr. Sarah Cohen Solomon to the table. Thank you so much, Dr. Cohen Solomon, for sitting down with me today. This is such a fascinating conversation that we're gonna have, and I am honored that you have sat down with me today. Thank you.

SPEAKER_00

2:38

Thank you. I'm really excited. This is uh an important topic that gets overlooked very frequently, so I'm excited too.

SPEAKER_01

2:44

Yeah. So before we get started, as per our usual, what is your drink order of the day? What is your comfort drink?

SPEAKER_00

2:53

I am in a peppermint tea mode these days. It's just comfy to drink all day. I I just recently moved. I'm in surround myself with comfy things mode.

SPEAKER_01

3:03

Yeah. And it's also really good if you're nauseous half the time.

SPEAKER_00

3:07

Yeah, I think I got into the habit that way. I'll put a little tea in uh or um, I'll put a little honey in and and and make it a bit of a treat. But uh it it works. It works with the comfort, it works with the nausea for sure.

SPEAKER_01

3:19

Absolutely. I am still in my plain old coffee era where I just love coffee, but I will tell you that coffee tastes better when it's in your favorite mug. I agree. I think someone needs to study this. There's no question. There's no question. Like this is this is my mug of choice, and if you can't see it, it has what's called an Indian paintbrush, it's a pottery. Oh, it's beautiful. And so I am from Wyoming, and this is the state flower, and my sister-in-law got that for me. And it that's my favorite mug, and it always tastes better in there. So no matter what I drink, it always tastes better. So I'm excited for this conversation for a couple of reasons. And it's because I haven't I've talked a lot about EDS and I've talked a lot about endometriosis. I there's there's obviously a correlation there, but what we haven't really touched on as much is just the adolescents that have to kind of navigate this. And as a parent with two young children, this is something that I'm very passionate about because I do what I do because of them. So I think you were the perfect person to bring this conversation to the table. Can you give us a background on what you do and a little bit of your story so we have a good place to start?

Dr Solomon’s Diagnosis And Calling

SPEAKER_00

4:33

Absolutely. So, my my journey was very fate-driven. So I myself have hypermobile Ellers Danlos syndrome. I was diagnosed when I was in college, but my symptoms started when I was around 10. And 10 years is not unusual for hunting down this kind of diagnosis, unfortunately. But uh, but pelvic pain and pain with menstruation was very much part of my early years as well. So, if we're talking about uh endometriosis, that's really relevant to my pain journey. So I grew up with a lot of diagnosis and medical stuff happening all around me and really wasn't sure if medical school was gonna work physically. So my my whole life involved a lot of trudging through the process of accommodations and accessibility and things like that for very invisible symptoms. So that became very much part of my personhood, not in a it's gonna define me way, so much as a, I'm a person who sees where problems still exist and I'm someone who is driven to fix them when I encounter those problems. So I got to medical school and that continued to be something that was very relevant to my medical training journey. And in terms of becoming an HEDS specialist, that was kind of an accident. I was actually always planning on uh at least involving adolescents in my practice. I love teenagers. I love that transition period. Um, and my my intention was always to be in academic medicine. But what happened was that my husband and I were out of the country for a few years for his postdoc and I couldn't work there easily. So I was going up and back to my previous position where I became an Ellers Dan Low specialist or a hypermobile one specifically, because that clinic was entirely focused on hypermobile Ellers Danlow syndrome and the conditions, as I say online, the conditions that go along for the ride. Absolutely. So yeah. So, and I wasn't unhappy with that. It was just more of a, oh, this unusual position will work with my unusual situation. And I know I can do it because I've lived it. Um, so sort of the universe telling me, all right, you know, you you gotta hold on to this identity piece, even though, you know, there's always that debate when you're growing up with a chronic illness. Do I want this to be my identity or do I want to do other things? But that's how I landed here. And now I'm I'm headed back to the world of academics so that I can also teach this to other people so that it's not just a small group forever and ever able to diagnose and properly manage these conditions. Cause that I think is the thing that's most important to me at this point for sure.

SPEAKER_01

6:57

Absolutely. One of the things that I've talked about before is that I was actually going into school to be pre-med, and I realized a lot of my health issues kind of prevented me from doing it fully. And so I switched from that to communications, which oddly enough, I'm now kind of commanding. Yeah, you're kind of both. Yeah. Which is why I love what I do. The challenge in that, and something that you spoke about, is just the challenge of knowing if you can accomplish your dreams based off of, you know, how your body may be functioning at that time. And that's something that's so real for so many people with both EDS and endometriosis. And that's, you know, for those people who maybe are not familiar with hypermobile EDS, can you just give us a quick synopsis of what it is and maybe some of the misconceptions surrounding it?

What Hypermobile EDS Really Means

SPEAKER_00

7:49

Absolutely. So, first of all, I want to be very clear that Ellers Danlow syndrome actually refers to a collection of conditions. Um, depending who you ask, it's either 13 or 14 discrete types of connective tissue disorders. 13 of those have a gene that we can actually test on genetic testing, you know, a little cheek swab. Um, and they cause connective tissue disorders that have various symptoms that are identifiable and have clinical criteria to do the diagnosis with that gene test. The hypermobile uh type of Ellers Downlow syndrome makes up maybe 80 to 90% of the total people with a type of EDS, but it's the only type that does not have a gene that we have 100% with certainty identified that we can do a test on. So it relies the diagnosis, it relies on a really good history and exam and listening to your patient. But what it does is that your connective tissue, which is the glue that holds you together, uh isn't formed properly, or maybe it's broken down improperly. We're still figuring out the details of the pathology. But what it means for us practically is that our joints are both hypermobile, which means they go too far, uh, as well as uh unstable, which means they are easily injured or dislocated with what, you know, the kind of injuries you wouldn't expect. I have dislocated my shoulder by sneezing, for example. That's not normal, um, obviously. But the more and more we learn about, especially the hypermobile type, and I want to be clear that that while I do see other types, I do see majority hypermobile. So if I say EDS, I usually mean that, but I really shouldn't. It's a bad habit. It should be individualized by type. But the more we learn about the condition and all of them, is the more we see that it is so systemic that we had no idea. When I was diagnosed, it was considered joints only. And now we know that it affects the gut, it affects the nervous system, it affects the pelvic organs. Um, you know, and so it's really important to understand the systemic nature of this connective tissue problem so that we can properly not just understand it, but reach better management planning. Because if we just assume it's it's one system and one system only, we are really limiting ourselves.

Management Over A Magic Cure

SPEAKER_01

9:55

Yeah. I think one of the questions I get often is is there a treatment for hypermobile EDS?

SPEAKER_00

10:01

That's a great question. So I prefer to use the word management approach. Um, treatment implies that I've got a magic pill or a wand or something that is going to fix the problem. And unfortunately, right now, the gene editing technology that exists is not ready for human use on this condition. Maybe someday I think it's possible. The more we learn, the closer we get. But in in this day and age, management is where it's at. So I can't fix the underlying problem, but I can make it significantly better both by early recognition, wink wink to our pediatricians out there, right. And uh and really understanding how it works. So physical therapy is very, very important, but it's important when it's done correctly. So we don't want somebody who assumes that we're one isolated joint injury that you push through. That's really dangerous to someone whose entire body is involved. Because usually there's like a pattern of injury. It's not just, oh, I've hurt my shoulder. My shoulder hurts because I've been walking funny, because three years ago I sprained an ankle that never healed properly. So I've been hiking up that backpack so I can walk off the ankle. Like that's that is normal for us. So insurance makes it all about the shoulder, and that means we don't get appropriate care. So when we look at it as a systemic issue, we get better physical therapy, we get better outcomes. And it's important to be with someone willing to not just learn about that, but but take it seriously. So physical therapy, 100% valuable. There are other techniques as well, like uh Jeannie DuBon has a phenomenal app and membership program um called the Zebra Club. She's a, I believe, Pilates uh trained instructor out of the UK who works very closely with the Eller Stanless Society. And uh programs like hers very much focus on getting in touch with your body again so that the years and years of pain and and genuine fear that your body is going to malfunction on you, which is a real phenomenon, you can kind of start unlearning that because that's an added layer that makes it hard or near impossible to do the work. Because we need, it's not just, ooh, I got to exercise. It's I have to move my body in a way that is safe, but I also have to believe that it's safe. So it's it's it's a whole thing. If I had 12 hours, I wouldn't be done explaining it. But Genie's program, the Zebra Club, is great. There are other techniques out there that I'm happy to go into in great detail, but slow start, gentle movements, incorporating it into your day is where I always start and body awareness. Um, because by the way, proprioception, meaning my awareness of where my body is in space, is really poor in people with L Standard syndrome. Um, all types, but specifically the hypermobile type. Like I walk into doors all the time. I will wake up with a bruise that I don't know where it came from, and that has implications. So it's really important to train your body to know where it is.

SPEAKER_01

12:39

Absolutely. I mean, I that's something that I've really, really struggled with is just that spatial awareness of knowing where I am in space. And I work with my trainer a lot with this. And I think that's one of the things that has been really impactful for me is finding a trainer who does functional movement. What does functional movement mean? It means various things, but what it means is someone who's not going to shove you into doing burpees that you cannot do. Yes. It means allowing your body to function at its optimal without hurting it. Yes. And that's something that we've had to work on. It could be like a light little touch for me that just helps me know my space better. It doesn't necessarily mean that I can't do things. I just have to modify a little bit.

SPEAKER_00

13:22

Exactly. And I love exactly the way you said that. So because I am seeing young people who are growing into themselves and figuring out who they are, the last thing I want to do, and I never I never feel like I even do this perfectly, but my goal is always to make sure that they know that I'm not saying, oh God, you can't do anything, you know, protect your body at all costs. I'm saying we might need to modify what you do. What I want to do is figure out a way that you can do the things that are meaningful and that you love. You know, is that necessarily the best thing directly for your joints? Well, if you love track and field and you're slamming on your joints all day, I'm going to have to tell you that that might cause harm. But at the same time, not every single person with hypermobile LHD and lose and and hypermobile spectrum disorder, by the way, as well, tagged onto that, is different. It's it's different. My twin sister and I have the same list of diagnoses. And at no point in our lives have we looked identical or been able to function identically at all. So I never want to tell a patient, you cannot do that, you can never do that. I want to say, at this time, that might be dangerous. Let's see what we can do to make it more feasible. And sometimes I need hard conversations where, you know, something is like when the neck is involved, for example, there might be a hard stop. But the goal is always let's get you as functional as possible. It might be slower than it would be, you know, looking at your friends at school, but I want to do as much as we can to make you as okay as you can. And I want to put a little plug here that that does not mean that you can't or shouldn't be using something for mobility. So if you're someone who is also in pain all day, having an easier time moving might mean that you need a scooter or a wheelchair or a rollator or something like that. And that is still better than the pain of pushing through inappropriately and then causing harm. So I'm I'm I'm full team accessibility mobility aid and not limiting how we think of movement and exercise. That is only a limitation and we shouldn't, we shouldn't.

SPEAKER_01

15:12

There's so much there because I mean, first of all, you and a twin, that should be a case study in and of itself, right? Like well, so actually we've been in studies.

SPEAKER_02

15:20

Have you? It's like a I'm like, this is fascinating.

SPEAKER_00

15:23

So the so the the Milner study that came out in 2016 about mast cell activation syndrome, um, where they found the first uh triplication uh gene called hereditary alpha tryptisemia. Um we were both in that study. She has the uh the duplication, she has that that that gene problem. I do not. Her mast cell symptoms have always been more severe than mine. We're fraternal, by the way, for the record, so that makes more sense. But uh, but yeah, no, you're right. Having having a twin with all the things has been scientifically interesting, but also really valuable for the support of it. I I never had that that pit of despair that comes with feeling like you are alone as a teenager in a battle against your body. I had a buddy automatically. Yeah. And that's not 100% positive, but it was definitely a weird silver lining.

SPEAKER_01

16:09

So you're not doing it alone, so you don't feel like you're an outsider looking in type of thing. Like great. We both have it. Yeah. I didn't even know hypermobility was a thing. Like, I mean, we talk about this all the time in the hypermobile space, where it's like it seems like a really good party trick, and it's just really not a great party trick. Right. When you get older, you get in your 40s and you're like, yeah, but I'm not sure I want to.

SPEAKER_00

16:33

The more the more you do the party trick, the more lax that area can become. So it's easier and easier to injure. Uh, and does that cause a problem in everyone? No, not necessarily. But people will come into my office and and since very, very often they've been dismissed or or not believed by other physicians, they'll come in and be really eager to to show me and tell me and convince me that this is an issue. And so they'll come in doing all sorts of, as you call it, party tricks, and I will not be demonstrating for that reason, but you know, coming in being like, look what I can do. I swear it's real. And I'm like, I promise I believe you, but put your joints back in and we'll we'll go one by one.

SPEAKER_01

17:10

It's yes, that that is a real thing that I think.

SPEAKER_00

17:14

I do not want anyone leaving more injured than they came in.

unknown

17:18

Yeah.

Manual Therapy And Neck Adjustment Risk

SPEAKER_01

17:19

Please. Please just don't show me. You can tell me. Yeah, I b I will believe you. Yeah. Yeah, exactly. With people with hypermobility, should we use caution, especially because I remember back when I was growing up, I was using um a chiropractor to feel better because I thought everything was popping out of joint. I was going to massages all the time. Is there a warning that we should adhere to when these modalities come into play? I am so glad you asked.

SPEAKER_00

17:47

So, so the major thing, the really the only thing that I put a complete please don't ever do this, is a rapid high velocity neck adjustment. And generally speaking, that is a technique that more chiropractors use rather than physicians or physical therapists, but certainly anybody who does manual therapy techniques might do this. So, what that means is a rapid cracking of the cervical spine of the neck here. And because there are very important blood vessels that are adjacent to those joints that are being manipulated, if it's done too quickly or without appropriate caution and care, it can genuinely cause a rupture in the vessel, which is obviously very, very dangerous and potentially deadly. So we do not want that. I have had patient family members for whom that has happened too. So this is a real problem. So that's the only thing that I say absolutely never, ever, ever, ever do. Now, to answer your question more broadly, manual techniques are extremely and by that I mean techniques that can allow a joint that's gotten either jammed or partially dislocated or fully dislocated to get back into alignment. And by the way, it's actually sometimes really hard to tell what's partially dislocated versus more of a muscle spasm that is making things feel stuck. And at the end of the day, the techniques who you go to to get it fixed are gonna be pretty similar, but it's just useful to know that, you know, there are there are injuries that can feel like that, but technically aren't it's a words, it's words that people use a lot to describe what they're experiencing. So um chiropractors, physical therapists, um osteopathic physicians, so a DO rather than an MD, they've had the same training as me, um, in addition to uh the hands-on techniques to work with this alignment and help the body function better, move better. That can be extremely important so long as they are aware of the increased possibility of injury and risk to the vessels specifically. Now, the World Health Organization has a warning saying people with EDS in general, hypermobile EDS specifically, should not go see a chiropractor, but it's really for the reason of that vascular risk in the neck.

SPEAKER_01

19:45

Okay.

SPEAKER_00

19:46

So what I say is a little bit more nuanced. I'm very shades of gray. What I say is what you want is someone who understands your body. You want someone who is willing to listen to you, understands how the instability of this condition works and what risks that involves, and then who is willing to listen, learn, and adapt adapt accordingly. So if you live in a community that has exactly one chiropractor and no other physician or PT for a hundred miles, then what we want is to work very closely with the chiropractor to carefully explain what is safe and what is not safe so that you are getting some care, getting better than nothing can. Depends on the person, obviously, but I never want someone to say they can only see one type of person because that limits who's available. And if I'm being totally honest, a lot of the time the people who sit in my heart and my memory as care team members who made the most difference for me, they did not come into that relationship knowing anything about hypermobile LA Stanlow syndrome or dysautonomia or any of those things. They came in curious and humble and willing to go home and say, I do not know anything about these conditions. I'm gonna go learn about them. That creates a safe bubble where you can create a relationship and be safe and get care and get healthier, even though someone didn't come in with that originally. So I never want to limit that opportunity. Right. Yeah.

SPEAKER_01

21:05

That's like something that I was always fearful of after I learned that I was hypermobile. I was like, you know, that's one thing I have to be so cautious of. I but there were also moments where I needed extra support that they could offer. And I think limiting our support system can in some ways hinder healing and relief.

SPEAKER_00

21:25

Yeah, I agree. I I think that one of the most important things becomes relearning how to trust your body to move and function. And again, that still might include accessibility, mobility aids, et cetera. But if we walk through life afraid of everything, your body will incorporate that. And so, by the way, that's that's sensible, that's logical. If a if a joint falls out with no, you know, nothing to cause it, it just does that. Like that is genuinely terrifying. And so it just takes so much effort to to feel comf comfortable and confident again in a body that is inherently unreliable. But that's really the key to a good. Life. It doesn't mean it erases everything. It doesn't mean we ignore the problem. It means we incorporate it into how we live and how we adapt and how we look forward so that life can be okay. And it's different for everyone. It just has to be.

SPEAKER_01

22:12

Yeah, absolutely. I mean, everyone is so different. And that's why our bodies are just so uniquely made to each of us, right? I love that. They're so uniquely made. And no, there's no one size fits all for anyone, right?

SPEAKER_00

22:27

But that's often how we're trained in in medicine and in most things. And that's not inherently bad, but it is limiting if you're looking at a condition like ours. So it's it's important that that's part of that's why I'm going back into academic medicine because it's so important to make sure that the culture of all or nothing black and white thinking, you know, multiple choice test taking, that is not what presents to you in the office ever.

SPEAKER_01

22:51

Yeah.

SPEAKER_00

22:52

Ever. Yeah.

Early Signs Parents Should Not Ignore

SPEAKER_01

22:53

And speaking of office, you work with adolescents, yes, pediatrics. Love it. And which is so cool. Like I don't often get to talk to someone that's working in pediatrics, but I think I need to more because I it's to recognize signs and symptoms and ways that we can support our our kids earlier, I think is gonna change the difference in the narrative long term for these people growing up. And so with hypermobility and EDS, what are some early signs in children that parents or pediatricians might miss?

SPEAKER_00

23:28

That is such a good question. So one of my long-term goals is actually to create some guidelines on this specifically and early recognition of becoming part of, for example, the wellness exam for kids as they grow up. That's that's just a long-term dream. But for now, first and foremost, if a parent comes in worried, you believe the parent. Let's just start there for a second. You don't come in and say, I gotta calm down this parent. You go in and you say, This parent is worried. Let me figure out why. Let me figure out how worried I should be based on how worried the parent is. That's where you start 100% of the time. Now, once you've once you've done that, one of the earliest signs that I hear about is not always necessarily what actually comes into the office. It's more of a, let me look back at it. It's that they don't seem to be keeping up with their peers in playtime and activities and things like that. So that early sense of fatigue, the my kid needs to rest more after activities, my kid has growing pains is a phrase that I feel triggered by. And I don't mean that flippantly, frankly. Right. But the phrase is overused. When kids come in with pain that is lasting more than three months and it is disrupting quality of life or activities, that is a problem and you need to investigate. So pain should always be evaluated. It should always be evaluated. Fatigue on top of the pain should be evaluated. And hypermobile EDS and HSD are not the only things that could be happening there as well, by the way. So we do have appropriate workup guidelines for when someone comes in with what might be considered growing pains and needs to be ruled out for other things. God forbid, you know, the one could have in the leg bones. That is one of the top things we worry about when we hear about growing pains for a kid. So is this a significant finding. Don't get all scared if you're listening to this at home. It's not usually that. I'm just thinking as a pediatrician who needs to make sure I don't miss scary things. So yeah, so so pain and fatigue is the number one thing. Difficulty keeping up with activities might also be more of the orthostatic intolerance, for example. There's very limited data on that in kids under 12, hopefully more soon. But I absolutely see kids just not able to stand in, say, choir practice or soccer practice. Actually, when they're moving around, it tends to be better during the activity and then they crash after the activity. But standing for choir practice or during religious services, for example, that's when the kid's like, I gotta, I gotta lean on something.

SPEAKER_02

25:46

Yeah.

SPEAKER_00

25:46

Or if your kid is, you know, if you go to the checkout line at the grocery store and your habit is to send the kid to the chair that's by the door so that they're not standing online with you, that's significant too. A kid should not have to go sit down that frequently. So um, those, those are the things that tend to come up first. GI issues, absolutely early, early, early, mostly constipation, but can be diarrhea, can be IBS, can be just difficulty with nausea and eating. I I anticipate that there will be more and more data on food sensitivities and things of that coming up, but it's still a very vague cloud of symptoms, but GI interference for sure. And then we get to adolescence and we hit menstruation and hormones. And if someone comes in and does not have pain with their periods, I'm actually more shocked.

SPEAKER_01

26:32

So much to be said about that. So much to be said about that.

SPEAKER_00

26:36

Yes, yes. Which we'll get into. And just to be clear, again, to anyone listening, painful periods does not mean go get a workup for hypermobile Larzanlo syndrome, but it does mean that pain with periods should be taken seriously. Your child should not have regular pain with their periods that disrupts their life. There are things we can do about it. Do not let that think that that is a normal situation or something that should be put up with. Just saying that loud and clear.

SPEAKER_01

27:00

Yeah, I agree. Also, like for me, I had a lot of bruising. Like just random bruising. Yes. All the time. All the time bruising and like feeling just dizzy, or those are things that I often felt as a kid, which were really unexplained to me. Absolutely. I didn't know why.

SPEAKER_00

27:19

Those are very, very common symptoms for sure. One of the issues with those is that they can get very much lost in the in the picture. So a a gripe I have with our board questions, for example, I this 100% true. I had a board question during medical school, what's called step one of the board exams, that said, uh, you know, uh, a teenager comes in with a lot of bruising. And I think it was like a like a joint injury, like a shoulder dislocation. And then it said, also, the parents are in the circus. And then they had a picture of the of the thumb hypermobility. What condition might this individual have? And I was like, wow, that's weirdly specific of you, board exam question creators. Thank you. Um, but but it was just like none of my patients come in first mentioning the bruising. It's more like, oh, once we kind of understand things, the bruising becomes a little bit more like clear, or there's a parent worry that there's like a blood disorder causing bruising, and then they mention it earlier. Because yeah, it's it's prevalent. I bruise like a peach.

SPEAKER_01

28:18

For long times, like they stay forever.

SPEAKER_00

28:21

They do, they do. And and that has to do with poor connective tissue. Um, so there's poor healing, even though it's not the same risk as the vascular type of uh velars danos or or some of the other other specific types, C V E D S, um, there's still a general vulnerability to our vessels more than the general population. Details TBD. But yeah, healing is slow, easy to bruise, slow to heal. It is what it is. Now, I do want to make a really important point that is very serious, which is that in children, excess bruising can be looked at as a potential sign of abuse. So it's really important in that setting to document what's happening. Because God forbid that becomes, you know, a medical concern because we as pediatricians have a responsibility. We are, we are legally bound to and ethically morally bound to make sure that a kid in our care is not being harmed. So if we have a concern for abuse, we have to report that there's simply no other option. However, very few pediatricians, you know, just in terms of our training nationwide, are deeply familiar with EDS in all of its forms. So we also have a responsibility to be informed and aware of conditions that might make it look like abuse. So we know, you know, if a kid has ateogenesis imperfecta, for example, um, or OI, uh, which is also called brittle disease. And there are a couple different types of that, but you know, the colloquial name for it says it right there. The bones are brittle, they break easily. You're gonna see that on a physical exam and on the history. If you get an x ray, you can see various, you know, stages of healing. So pediatricians who specialize in abuse know to look for that, for example. But usually that's already diagnosed. Hypermobile other standos, not so much. And there's debate about whether bone fragility is involved in HEDS. There is just to be clear, there is actually no strong, well-done study or data to support that bone uh fragility is a clear symptom, but there is also not 100% data to suggest that it isn't. We're in a gray area. Um, but bruising is definitely something that happens with uh HSD and H EDS as well as the other types.

Flexibility Versus Instability Red Flags

SPEAKER_01

30:29

So and that's a very serious, very important subject. I mean, and we've talked about flexibility, right? Like it's not just about flexibility with correct hypermobility or EDS. When should flexibility raise a flag for young girls? Pain and injury.

SPEAKER_00

30:46

Yeah. So flexibility, I love that you asked this. So these terms are are used so interchangeably online, and I'm guilty of it as well. So flexibility has more to do with the muscles being toned and trained to be able to do things like gymnastics and ballet. But flexibility also implies that it's a muscle skill where you have some control over it, where you are stretching to be flexible. That's not a bad thing. Hypermobility usually is inborn, although, you know, if someone is very flexible, you can kind of push and maybe look like you're the same as hypermobile. But technically, hypermobility means the ability of the joint to go further than the average distance. So you can be hypermobile in one area, you can be hypermobile in several areas, and we have categories for that. But what's really, really important is that hypermobility all by itself is not a problem. Right. Okay. It's not. If you have hypermobility with appropriate flexibility and strength, go be a gymnast or a belea dancer. Um, you know, please continue appropriate care with sports medicine, anyways. But um, but you might not ever have a problem other than the fact that you are doing sports. However, instability, because the connective tissue isn't doing its job well, is where the problem becomes a problem. And so you can have hypermobility without instability and have no issues in your entire life. I had there was a kid I went to, kid, young adult I went to medical school with who had the most flexible and hypermobile elbows that I have ever seen in my life. And he could do push-ups, he could do pull-ups, he was fine. He'd never had an injury. It was just everyone in his family had the same thing. They, they went, when I say they went far, they went far. And it was his genuine party trick. No injury, no problems. And that's that was always my good example of like you can have flexibility, you can have hypermobility. If it's not associated with instability, it's not really a problem. But we use all those words very interchangeably. So instability is where we start getting the chronic pain, the uh injuries that don't make sense, um, large and small. Um, and and that that is where it becomes a problem. That is where it becomes a problem. Yeah. So even things like I would say younger, younger kids are gonna have your frequent ankle rolls walking along the street and suddenly boom, you know, you've got another sprained ankle. And it's like, oh yeah, no, we've we've done this before, we've got another one. All right, you know, because it becomes very normalized within the family. Or I have several families who went to the ER so many times for something called nursemaid's elbow, which is a very easy dislocation to have, especially when you're young, it's actually so common that we adjusted criteria in 2023 to not overdiagnose because it's super, super, super common in young kids. Because if you have your kid and you're holding them by the by the wrists to do something silly, like swing them around, boom, it comes right out in young children without EDS. But if it happens frequently enough that you're in the ER and the ER staff is like, maybe I'll just teach you how to do it so you don't have to come in, that is a signal that I need to hear about. If you know how to fix that yourself, something is wrong.

SPEAKER_01

33:49

Never put that together. And now I'm like looking back at like even my kids, and I'm like, gosh, you know, this is so important to pay attention to those like minute details to some are huge details to providers who can address this.

SPEAKER_00

34:04

Like I want to be clear, it's about the pattern, it's not one thing. It's never one thing. So you know, you could have a parent who that elbow just got dislocated so many times they didn't want it to save time, but nothing else ever happens. The kid has no other symptom, lives a wonderful life, da-da-da. Um, or it could be part of a picture.

Why Early Recognition Changes Everything

SPEAKER_01

34:23

Right. Absolutely. What are the risks of not recognizing this early and recognizing EDS or hypermobility spectrum disorder early?

SPEAKER_00

34:32

That's a great question. And it's it's very difficult because the data we have is really based um on inadequate care and inadequate recognition. So I'm I am extrapolating when I talk about these things. So the younger kids I see, mostly, not 100%, not as severely affected yet. I do have a handful who are very young and very severely affected. And for those, I'm also very considerate of doing the full genetic panel to make sure I'm not looking at something else, even outside of the EDS spectrum. But the younger kids usually are more like clumsy, if you will. Sorry, guys. Yeah. They're having a hard time keeping up. They might have pain. They absolutely might have pain, but they are not already necessarily out of school as much. They are not, you know, every organ system involved as much. Constipation, yes, but you know, they might not yet have the headaches or the period pains, da-da-da. So, what I like to do with the younger kids is get them into PT that focuses again on that proprioception, body awareness, learning how to listen to your body. I again, I don't like calling it setting limits so much as body awareness. Um, and my hope is that by doing those things early, we are uh people love the phrase like resetting the nervous system. But kind of, yeah, you know, if we can do a reset when you're young, you might walk into things less. So you might have fewer injuries. You might be more aware of, oops, I've made an injury happen here. I fell down, my ankle is gonna be a problem. Let me fix that before it becomes a cascade of issues into everything else. So you have a toolbox in place already so that you can function better and not have to kind of dig yourself out of that physical hole of symptoms. Because the older you get, the more I see that there's this, it's a hole, it's a backlog of all right, you know, I can't eat, I can't sleep, my head hurts all the time, I can't focus in school, the school is mad at me because I'm never in school. And it's just it's everything always all of the time because it affects everything always all of the time. So that's what I see the older they get. Not everyone's the same, it's not identical. Sometimes the symptoms are kind of manageable until adulthood. For some people, pregnancy is a trigger for symptoms getting more severe or significant. Sometimes there's an injury that's like really severe, a surgery, something like that, and it can kind of tip the scales towards worsening situation. But yeah, you know, the earlier we can increase at least awareness, if not some management and intervention, I think the earlier the better. Hopefully the data will follow. Yeah.

Advocacy Without Triggering The System

SPEAKER_01

36:52

Did that answer your question? No, it's excellent. I feel like there's as a parent with some a child that potentially has hypermobility of some spectrum. I it's something that I'm so aware of because of my own history, right? Like we as parents oftentimes put ourselves and maybe wrongfully in our child's shoes. And it's like, did I go through this? Is this, are they experiencing the same things? And also that can help them get care much sooner because we are becoming more educated and more aware of the things that, you know, uh have affected us. And I think we're starting to talk about these things more. And that's why I think, you know, understanding what we should be made aware of is key to knowing where we should go in our journey and in our care for our kids. Yeah. And how do we advocate for our kids if we don't know what we sh are advocating for sometimes, right? That's such a good question. Yeah.

unknown

37:48

Yeah.

SPEAKER_00

37:49

What are we advocating for sometimes, right? Let me let me ask her. Um, so humor aside, I think that's one of the the biggest challenges for parents. Um, and and I'm not, I'm not yet a parent, but you know, have very strong memories of my mom with her tote bag with all of the medical records. And um, I will I will never be able to thank her enough for the advocacy for both my sister and myself. Never. If she hadn't fought, we wouldn't have gotten our diagnosis. So, you know, that's my people sort of assume that I'm doing this mostly for catharsis for myself. It's actually more for my mom. It's more because the burden of caretaking and unraveling the situation falls so heavily on the parents. Yes, that I saw what she took on and had to take on. And I don't want anyone else to have to do that. So, in terms of how and what and when, uh again, you know, going back to what I said earlier, if a parent comes in concerned, you take that seriously. So, how and what should the parents be doing? That's a great question. If if we're if we're working with somebody who has a diagnosis for themselves as a parent, that in and of itself is just a reason to be watching carefully because there is an inheritance pattern, even if we don't have a gene to identify. So keep it in mind. We take a family history for a reason. End of end of story right there. The parent is still figuring it out or has not been diagnosed themselves. And often because it runs in families, there is some limitation on recognition because it's like, oh yeah, the whole family just gets tired after an outing, or you know, oh yes, the whole family gets joint pain after whatever, you know, it's okay. So there's a normalization by accident that limits recognition. It's nobody's fault, but it is a funny pattern. And there's very often, if I'm doing the workup for a teenager, there's usually a parent in the corner being like, oh, it's me. So I'm the problem. So so there is that. But how to how to do the advocacy? Uh man, oh man, oh man. So first and foremost, your child is your first priority, is my understanding. So I will never say to someone that what they're doing is too much. Obviously, you know, there are lines not to cross. Please don't yell at my staff. But if you feel that you're not getting the care and recognition that your child requires to be healthy and safe, you you keep going. And uh, and there's danger in that, you know, culturally, the phrase doctor shopping really needs to be abolished because to me, there's this fine line of all right, the phrase, this horrible phrase of doctor shopping is meant to imply that a family, an individual is is looking for an answer. They're looking for a diagnosis because they're trouble in some fashion and and and they're never satisfied with what they're getting. No, turn that phrase around and say, my child or myself, we are we are not finding the answers and we are suffering. Should I not keep going to more doctors to try to find the answers? You know, so so we've got we've got language that needs adjusting. That's a systemic problem. And it unfortunately the burden falls disproportionately on the families. But generally, what I tell people to do is write down your priority questions. What is what is disrupting the life, the quality of life most, so that we can prioritize what needs to be looked at. Because even if it's not HSD or H E D S, I have the privilege of being able to figure out other things too. So we need to know what is most problematic for you, what's most bothersome. I generally recommend against going into an office setting, unless it's with me, by all means do it with me, and saying, I saw online that my kid feats these symptoms and I want you, the doctor, to evaluate for this condition. We don't really like that. We're not trained for that, also. We're trained in the other direction. So when we're trained in medical school, we're given a script for how to do a patient interaction. And it begins with, what are you here for? What is your chief complaint? I hate that phrase also, because it means everything is a complaint. I have a lot of issues with the language we use in medicine. So a person comes in, they say, This is what's bothering me, and then you dig into the symptoms as a detective. And then you, the physician, make a list of what you think is most likely. You do an exam, labs, whatever is appropriate, and you make again a list of what's now more most appropriate, and then you treat accordingly. The world we have now means that everybody comes in, and this is not an inherently bad thing, but people come in having done their research. And the phrase, I've done my own research, is a great way to trigger a pediatrician. Again, I don't use that phrase flippantly, because the internet can be good or bad. It depends what you use it for. So if you come in and tell a physician that you've done your own research, I promise you they will go. Because it means most of the time it gives the physician the signal that you have something in your head that you're not gonna leave, you're gonna leave unhappy unless you get that specific thing. But it might not be medically the most appropriate thing. Now, I have been the patient on the other side of that conversation, and I gotta tell you, when physicians respond that way, it's very unhelpful. So these conversations are are really sticky and and really difficult because the internet can be magnificent. It's amazing the data and the information we have access to. And I gotta tell you, most of the time my patients come in correct. Right. They they do the research, they look things up, and they're correct. You know? So, but anyways, if you come in and tell the physician this is what I want done, that's almost always going to not go well just because of what we're trained for, the worry about doing inappropriate medical testing. So, what I recommend instead, if you're really concerned about a specific diagnosis like HEDS, go in and say these are the symptoms that are most problematic. They are causing these issues with quality of life. Also, because I want to do my due diligence for my child, I've been reading as much as I can and I try to stick with things that are reliable because everyone's gonna assume you've gotten your information off of TikTok, which sometimes is good, but not always. And you can come in with, you know, journal articles. Don't overwhelm the physician. We only have a finite period of time and say, look, I'm I have this concern. I know it might be other things, but I'd like to give this thought so that at least I can be reassured.

unknown

43:34

Yeah.

SPEAKER_00

43:34

So a little bit of humility on the parent side so that it doesn't feel to the physician you're about to be in trouble with the patient if you don't do exactly as I ask, like hostage situation. You know, we don't want that. Um but because of how often patients come to me having seen, you know, 20, 30, 40 doctors, that's common. They come in with trauma, genuine trauma. So it's really hard to have those conversations gently and advocate for your child gently. Once that's all built up, by all means come see me and and tell me all about those things because it's actually valuable information for me. So I know where you've already been, what has been ruled out, and what the workup has looked like.

SPEAKER_01

44:12

Right.

SPEAKER_00

44:12

But that's me. I'm set up for that specifically and I'm asking for it, you know? So it's hard. It's real, this is one of the hardest things I think a parent can ever do.

SPEAKER_01

44:21

Absolutely. And as a parent who has walked into doctors' offices and had discussions on this, one of the things that I always walk in with, and this is kind of just how I have phrased it, is is it worth considering X, Y, and Z based off of these symptoms? Yes.

SPEAKER_00

44:39

And then follow up with, and why not? If they say no, why not? And not to be pushy, but to say something like, Thank you for considering it. Can you explain to me why not for reassurance?

unknown

44:52

Right.

SPEAKER_00

44:53

You know, and then you can say, can you document that so I can remember and pass it on to the next doctor so that we can rule things out and not reinvent the wheel every 10 minutes? What you said right there is beautiful.

Medical Trauma And The Right Role For Therapy

SPEAKER_01

45:03

Yeah. And that's, I mean, I, as a patient who has experienced medical trauma, I have to kind of drop as a parent, I have to be able to drop my trauma at the door because it's not about me in that, in that circumstance. It is about my kid. However, I will tell you that as a parent, sometimes we do experience medical trauma in efforts to help our children, right? Undeniably. And I do think that it's worth considering getting someone to help you walk through that because what we, and you can probably speak to this a little bit more than better than I can, but if we don't walk through that and and work through some of that healing process, it then goes on to our kids. And the trust factor diminishes even with our kids at an early age because that is how they're being taught to approach medical care. And not saying that all medical care is this way, but I do think that we have to be very aware. Like if we're going and seeking help, there is a chance we might have medical trauma come from that. But also, can we walk through this in a safer way? And is there a way that we can address those traumas that then don't create more of a generational trauma? And so that's something that I'm I'm very aware of with my kids because I do have that. And I have to be very aware not to pass that on to my kids.

SPEAKER_00

46:29

That's so that's so insightful. And again, I say that this is this has got to be one of the hardest parts about parenting when you have a kid who has a chronic illness. And I know that my mother would agree. And so my one of the one of the things my mom says all the time about self-care and about being the person helping the other person as either a caretaker or a medical professional is that if a boat has a leak in it, you can't help the people in the boat if you're in the boat, also. And by that she means, you know, that it's important to put a priority on helping yourself, at least at the same time, if not first, you know. Airplanes, put your own air mask on, then help your kid. You can't help your kid if you don't have your own oxygen. And that I think there's no parent alive who'd be like, oh yeah, that's my instinct. Let me help myself first. That's not how that brain part works, right? So you're right. Addressing and respectfully managing one's own trauma is key. Cause I absolutely have parents who it's very clear sitting in the room. They are, they are holding it right here and they are scared and it is valid, and it does make it harder for them and the kid and for me. Not blaming, just truth. And so something that's valuable there is being able to teach your child the language for self-advocacy because of one's own experience, for example. Um, but I have seen it swing too far where kids who are very, very young are incorrectly using medical terminology because it's it might have been appropriate for the parent's condition, but it's not technically condition uh appropriate for the kids' condition at that time. But that's the language that's been passed down. So caution needs to be, you know, part of the picture. But that also means you have to have a physician, a medical team that's there to help you. And it's not only the burden on the parent to do all of this. It's not fair. So I want to emphasize that there's a hundred percent a role for appropriate uh uh mental health and therapy. And by appropriate, I mean we are not going to make the condition go away by going to therapy. That is not how we use therapy. That's not an appropriate referral. Please.

SPEAKER_01

48:22

I can clap to that all day long. That is where a lot of medical trauma happens, is when they just refer you to mental health.

SPEAKER_00

48:29

Yes. So, you know, and and you know, the clinic that we're building, like we know this, this is important. But what's also important is that if you live your life in fear of pain and in pain, you're going to need some therapy at some point. It is not fair to you as a human being to not have someone helping you with that burden. It's hard. It is hard to independently get your brain on track if that is what you're dealing with. Those are facts. And so there are people who are trained with trauma-informed care and and and pain management understanding to understand how these types of chronic illnesses affect you as a human being so that you can at least remove the layer of mental and emotional anguish that adds to the physical. Because why do we need the extra layer? We don't need the oh, get rid of it. I don't want it. Let me just deal with the glue that isn't working properly. I want, I want the emotional stuff dealt with separately, you know? And to not do that, I feel is a disservice both to the kid and the parent. But you got to say that right and you got to say it at the right time because you're absolutely right. If that's what's offered instead of all of the other, I've got so many medicines, I got tips, I got tricks, I got all the things. But if I only offer you therapy, it's inappropriate. Right. It's inappropriate. 100%. Yeah, it's it's negligent, frankly. I'm gonna get I would agree.

SPEAKER_01

49:49

I'm gonna do that. And that's where a lot of us look back at our own history, and this is what we're gonna, you know, kind of go into is that with my endometriosis diagnosis, that medical history, like to be told you're crazy for your pelvic pain, for all the other pains that you're experiencing, and that just be kind of like it felt like a scapegoat. It felt like it being invalidated for our symptoms. And that's something that like so many of us have experienced. You were talking about the prevalence of pelvic pain in EDS patients or hypermobile um hypermobile patients. There is now some emerging research backing up the you know, conditions that like to party together, you know, those A EDS. Going along for the ride, as I like to say. Come along for the ride. Yep. And and they were not welcomed to this show, but they were not invited, they crashed. They crashed it. That's right. And that's why, like, we I have talked about this before, but there's a high prevalence of endometriosis patients who are also hypermobile or have EDS. And there's now some research to kind of back that up. Can you talk about this a little bit?

Endometriosis Links And Pelvic Pain Data

SPEAKER_00

51:01

I'd love to. I'd love to. So it's really it's just so exciting to be a physician in this field in this moment of exploding research. Because 20 years ago, when I was diagnosed, there was like just nothing, just absolutely nothing. So, first of all, I think it was about a month ago now, maybe a couple more. There was a specific paper that was put out having to technically it included all types of EDS. Um, so so the data has a little bit of limitations because of how it was collected. It was by ICD code or diagnosis code. And so we can't, we can't be 100% sure how to generalize or be specific. But that's fine because it was a it was big, big enough numbers that it's still valuable. And what that showed us is that people who have any type, but certainly generalized, probably generalizable to the H E D S specifically, seven times the risk of having endometriosis as the general population. Holy moly, you know, like good grief. That's that's seven times, you know. Uh so and then and then there was another paper, actually, there were several papers out recently from the Norris lab at Medical University of South Carolina that focuses on LC on those conditions. Uh, and they were looking in this paper at the whole spectrum of symptoms that are reported in HSD and H EDS specifically, so not generalizable. Uh, and they they found that in H EDS patients, pelvic pain was uh present in 80%, and in HSD, it was 66%. And and that's that's too many percent to ignore. Um that's terrible. And and there was a whole slew of of additional symptoms in both papers having to do with gyneclogic and menstrual related symptoms that are hard to live with. Things having to do with with pain during sex, pain that comes with your period, if your period is regular, or if you're someone who's having a period very frequently, inappropriately frequently, was on the list too. This is a this is a huge life problem for a not insignificant part of the population. If we are all agreeing that HSD and HEDS is actually maybe one in 500, maybe closer to one in 250, that's enormous. Those numbers are big. I'm not gonna do that math.

SPEAKER_01

53:09

No. No. And the prevalence of endometriosis, they say one in 10, but likely they're looking at one in seven. And if you correlate that with the percentage of HEDS, EDS, like I gotta assume it's gotta be, you know, it's there's gotta be some crossover there.

SPEAKER_00

53:26

It is worth looking into based on those numbers. Let's put it that way. It is absolutely worth looking into. And the more we look into it, the more we find forgive the pun connections. Right. But, you know, it's also it's hard to get big numbers because if we historically consider these things rare or not happening much or we don't record it adequately, then where do you get your numbers? So it's that is always a limitation in research, unfortunately. We're getting better at it. That's the silver lining. This is huge.

SPEAKER_01

53:50

Yeah.

SPEAKER_00

53:50

Yeah.

SPEAKER_01

53:50

Yeah.

SPEAKER_00

53:51

But you were mentioning, you know, the not being believed aspect. I think there is nothing you can do to harm a young person growing up more than not believe them.

SPEAKER_01

53:58

Yes. 100%.

SPEAKER_00

54:00

Yeah. Because not only are you telling them that we're not going to help you because of your, you know, I don't believe your symptoms, so I'm not going to give you care to make your life better. You're also telling them that you shouldn't trust your own sense of self. You shouldn't expect safety in the medical realm. You shouldn't expect to have your needs met. And you shouldn't, you shouldn't believe yourself when that is happening. And if you start being told that when you're a small person, that's horrific. That is, that is how we end up with systemic problems like doctors taking advantage of patients and things like that, because a patient doesn't learn to say when something is a problem because they've been taught not to.

SPEAKER_01

54:40

And it's interesting to think about that because I'm sitting here thinking about like when I was potty training, right? We tell our kids, listen to your bodies. Well, if you go in and you you've trained your kids to listen to their bodies, how does it feel inside? Do you know when, or you know, like when they're feeling sick, what do you feel? You know, we're training this from a very, very early age. If they are going into a provider's office in a place where they should be able to trust the outcome, and they're being told they're not, you know, what they're listening to isn't valid, it has to have deep repercussions for that. Yeah.

SPEAKER_02

55:13

Right?

SPEAKER_01

55:14

Like long-term repercussions for that. So, and and we've said this within the endometriosis space for so many years is part of the healing process, part of feeling like we are being heard is being validated, right? Even if you don't know what the sign or what the symptom is, you can say, I believe that you are feeling this way. I just don't know what it is yet. Absolutely.

SPEAKER_00

55:40

There is so much power in that, in that sentence. And I'll add as well that especially for, you know, the younger it starts, if you tell a person that their symptoms aren't real and that it's not happening, they still need to live their life. So by the time they get to my office, they're often very not sure of not only what symptoms they're experiencing, because there's sort of a fight or flight situation. Your brain is over here and your body experiences are over there, and they're kind of separate. So the parents are often in there with their notes saying, okay, well, my kid gets home from school every day expressing pain and da-da-da. But the kid's like, I I don't, I don't remember. I've put it in a box over there so that I can make it through my day. But then they also come in and I will ask things like, all right, tell me about, you know, your pain or whatever. And they'll say, I have the normal amount. Right. You should not have any pain. You are 12. If you have pain, I want to know about it. And they're like, pain's not normal. Well, you've never lived in another body. You've never lived in another body. How on earth are you supposed to make a distinction between normal and not normal unless there's been a change in your body? Sure. But if your body's always had a connective tissue disorder that does this, why on earth would you recognize what's not normal? I have kids who get on my table all the time and I will notice that like a shoulder is dislocated and they just consider it normal because it's been out for I don't even know how long. And then I'll put it back and they'll say, This is how I'm supposed to feel. And then they can move comfortably and some of their fatigue is relieved and things like that, and they are in genuine shock. I cannot tell you how often the first thing this always gets me, the first thing out of my patient's mouth when I say, Oh, yes, you definitely have this condition is you mean I'm not crazy. Yeah. Teenagers. You mean I'm not crazy? For that to be the first thing that you say when you have a diagnosis that you were pretty sure of, you came in thinking this is the thing you have. That's why you're in my office. And then the first thing you say is, you mean I'm not crazy?

SPEAKER_01

57:33

Yeah. I mean, that's ouch, it's mind-blowing. And also, we are really good at, you know, that word gaslighting. And I I don't love the word all the time, but like it also means what it means, you know, like we do gaslight ourselves into thinking that it's not a real symptom. And if we're always doing that from an early age, like we don't know any different. You know, and I even have said that before of like, I don't know what normal feels like. But what is normal? How do we put that into how do we put normal into words? Like, I don't think there is a normal, if we will.

SPEAKER_00

58:06

But for me, as the physician, if they come in with a concern about how something feels and it relates to how I feel, I can usually be like, oh, not sure that's normal. Let's think about that together.

Being Believed And Learning What’s Normal

SPEAKER_01

58:17

Right. Yeah. Absolutely. As a physician, if someone comes into your office with pelvic pain, should we consider both EDS and endometriosis, given the new research that's come out? Should we always kind of look at both of those as being differential diagnoses?

SPEAKER_00

58:35

Because that's a great question. I would not say that the data is is is substantial enough to say everyone who comes in with pelvic pain should be worked up for hypermobility. But everyone with pelvic pain who has other systemic concerns, other joint pain, that's gonna nudge me in that direction for sure. But there's no specific guidelines about that available yet. This is all literally new within the last several months. So we're headed in the right direction. And and genuinely, I'm of the opinion that we should be screening people for hypermobility and well, specifically instability when they're young anyway. So I'm I'm a little biased there. Uh but certainly if they're coming in and they've got the pelvic pain plus many other things. And again, I dislike this phrase, but what we what we say in medicine is if you're if your review of systems, which is to say you're checking head-to-toe other body systems to make sure we're not missing anything, if it's called pan positive, so you got the headaches, you got the nausea, you got the the diarrhea, the constipations, you know, dizzy, all the things. Every system has something clicked in the chart, pan positive. If you are somebody who has pan positive, we got to connect those dots. Then I'll start screening 100%.

Part Two Preview And Next Steps

SPEAKER_01

59:46

Interesting. See, and as a patient, I sit here and I'm thinking, I wish someone would have, given my symptoms, taken a whole you know, assessment of head to toe, which is hard to do in a 15-minute appointment the way that our system is built currently, right? Like you have 15 minutes as a doctor to like really get to the to the crux of what's going on. Impossible. Absolutely. And so that's what makes it really hard, I think, for things like endometriosis and EDS or H EDS, because you're not given the time needed to really fully assess the whole system, right? We are given a silo of a system as opposed to the entire system. And so I think that's what's really challenging, but there are some key things that we can be asking that can maybe differentiate what direction we go. As a patient, how should we walk in when we have concerns of both endometriosis or EDS? What are some main questions that we need to ask when we walk in that door? This conversation doesn't end here. And honestly, part two is where we get into some of the things I wish more families were actually being told. We're talking about how to advocate for your child and appointments when something feels off, how to walk in with clarity around your expectations and what you want out of the visit, and what to do when you're not being heard. We also go into the overlap between neurodivergence, endometriosis, and EDS, and how that can completely shift the way we understand what kids are experiencing in their bodies. And then we get really practical pain management tools, support strategies, and what it actually looks like to help kids feel more supported day to day. So if you're sitting here thinking, this sounds familiar, or this might be my kid, I really want you to come back for part two. There's a lot more we're going to unpack.