97. Learning to Spot the Signs of Ehlers-Danlos Syndromes with Guest Host, Kate Colbert

Episodes have been transcribed to improve the accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us at info@bendybodies.org. You may notice that the timestamps are not 100% accurate, especially as it gets closer to the end of an episode. We apologize for the inconvenience; however, this is a problem with the recording software. Thank you for understanding.

Kate Colbert (00:02.275)

Hello every Bendy Body, it's Kate Colbert. I am your guest host today on the Bendy Body's podcast and we're going to be putting Dr. Linda Bluestein in the hot seat of her own podcast, all in service of EDS Awareness Month. So for some of us, it's always EDS Awareness Month, right? But the calendar says it's officially EDS Awareness Month, so I think we should celebrate.

Linda Bluestein, MD (00:20.27)

Yeah.

Kate Colbert (00:26.947)

Or actually maybe we should get down to business and get to work spreading the word and educating other people and making some more light bulbs go off in the minds of patients, caregivers, teachers, daycare professionals, medical professionals, sports coaches, family members, all the people, significant others, coworkers, all the people who surround the EDS community. How do we help them be more aware?

of what EDS patients are coping with. So no matter who you are or where you are, you are literally surrounded by people with hypermobility conditions and you just might not know it. So, all right, I'm going to go ahead and start serving up some questions to Dr. Bluestein. So thank you, first of all, Dr. Bluestein for letting me guest host today. Isn't it nice not to have to host every now and then?

Linda Bluestein, MD (01:18.414)

I am so grateful. So yeah.

Yes, it's wonderful.

Kate Colbert (01:25.795)

Okay, so seeing that you, Dr. Linda Bluestein, the hypermobility MD, are one of the world's leading authorities on the clinical management of hypermobility conditions like Ehlers -Danlos syndrome, I'd like to shine a light on you, to take that light that you typically graciously shine on the guests on your show and shine that back on you so that we can spotlight why EDS awareness is so important, okay?

So let's get started. So let's start with precisely that question. Why is EDS awareness important?

Linda Bluestein, MD (02:01.742)

I think that with all the work that we have been doing, EDS is still horribly misunderstood. We still have a lot of work to do. We have made a lot of progress, but people are definitely not getting the evaluations that they need. They're not getting the care that they need. And sadly, medical trauma is still occurring and we can do so much better. There are so many people in the world of healthcare who they want to help.

but they don't know what to look for and they don't know what to do. And in medical school, we're taught what to prescribe and what treatments to do and what tests to run. We're not told what to do when the tests come back unremarkable and we're not told what to do when we don't have like a clear cut diagnosis. We're really not educated enough as to, you know, offering resources to people and doing something besides just.

you know, referring them to someone else. Cause a lot of people feel like I just keep getting punted around like a football. So I think that with awareness, we can do such a better job of letting healthcare professionals know. And in this case, I'm going to specifically talk about physicians that even if you don't know exactly what that person's diagnosis is, if you listen to them and if you believe them, you are doing something for them. I actually,

took a training course for this program called Rishi Healers Art, and I was the course director for this course at the MCW Medical School. And at that time, I was between my anesthesia practice and this practice that I have now. And this is one of the things that I taught the medical students. But it's funny because I was teaching it because it was part of the curriculum for the Rishi program, not because it was something that I had really deeply.

understood and processed. And I now, after caring for people for the past well since 2017 that have EDS and related conditions, I now understand the incredible value in simply listening to someone and believing them. And I want to say to my physician colleagues, if you are in a position where you cannot believe your patients, then please think about what is going on that you're unable to do so.

Linda Bluestein, MD (04:23.726)

you overworked? Do you have too much going on in your personal life? You're overly stressed? You're doing too much paperwork? Whatever it might be because people went into medicine to help people. They really did. And so if you're not able to do that critically important piece, which is listening to the patient and believe in them, if you're not able to do that, then the best thing you can do is look at yourself and figure out what do I need to change here?

there's something going on in my personal life that needs to be changed or whatever, because you can really make a huge difference in so many people's lives. People with EDS, they know they're complicated. They know that it's not going to be a quick visit, but they just want somebody to care. They want someone to express that they care and that they are going to try to help with the tools that they have. So you don't have to become an EDS expert.

but you have to have an open mind and an open heart.

Kate Colbert (05:23.651)

Wow, that is such great advice. You know, I think about my own journey. I was diagnosed with EDS when I was 45, right? And there were just hundreds of opportunities throughout my life where my diagnosis was being sort of served up on a silver platter to doctors who didn't get the diagnosis. And with all due respect to them for their expertise, the problem was that they weren't listening.

Right. And so I think that's really great advice and loving advice to your colleagues to say, you know, listen, like you don't have to know everything. You don't have to be an expert in everything. But every now and then your patient is going to bring you some complex set of questions or symptoms or signs. And you don't have to have the answer. I mean, that's that's one of the things, too. I wish that I could say to doctors more often is like, I don't expect you to know the answer right now. Like, you know, I don't expect that.

that there's this perfect formula that I walk in the door of a doctor's office and that I say, I'm experiencing this, this, and this, and they have immediately can jump to a diagnosis and a treatment. But what if we could jump to a conversation? What if we could jump to a listening, to your point? I heard Dr. Knight from the EDS clinic at Mayo Clinic talk at one of the, I think it was last year's Ehlers -Danlos.

Society Conference and talked about that the best doctor is a doctor who is listening. And in my experience, some of the most helpful providers on my team are people with whom I was their first EDS patient. So they had zero expertise in EDS when they met me and they learned along the way and I did some of that teaching as a patient. And but they were listening and they said, I want to help. And sometimes,

Linda Bluestein, MD (07:04.526)

Mm.

Linda Bluestein, MD (07:11.598)

Mm -hmm.

Kate Colbert (07:17.859)

patient is not going to be and I think that's maybe good advice for a doctor too is a lot of times of patients are not going to be able to articulate clearly that need. They're not all going to come in and look you in the eyes and say, hey doc I don't expect you to have all the answers but are you willing to be my quarterback? Like are you willing especially if you're like a primary care or a pain doctor to say are you willing to maybe help me figure out where we throw the ball next? Like do I need a different specialist? What sort of treatments should we be looking at?

Are you willing to learn with me and to help me? And I think a lot of patients don't have the ability to articulate that during a 15 minute appointment or whatnot. But if a provider could do that, right? If a doctor or a physical therapist could do that to say, okay, let me be vulnerable. I don't have all the answers. I'm not an expert on what you're going through, but I think I can help. And let's figure out how I can do that.

And I think that that's fantastic advice. So thank you for that. So let's talk about some of the other folks who might be listening or who might have somebody forward this episode of Bendy Bodies to them, who may be surrounded by people big and small who have hypermobility conditions and they may not know it. I want to talk about...

that sort of delayed diagnosis, why people are making it to 18 years old, 35 years old, 50 years old, 70 years old. I know somebody who wasn't diagnosed till she was 72. How it is that folks are struggling with coping with suffering from EDS symptoms for even decades and not getting diagnosed. And that's not all just on the doctors. Let's talk about teachers, daycare providers, nannies, people who have.

these tireless, amazing professionals who spend time with small children and caring for them and providing early childhood education. If I work with children, what do I need to know about EDS? Like, what do I need to be on the lookout for? If I work with small children, what do I need to know about EDS and why?

Linda Bluestein, MD (09:30.734)

So especially if you're working in a classroom setting, you can actually be a really helpful part of someone's diagnostic journey because you know what a lot of different kids of that same age group look like. So you can really say, compared to other children, this particular child is injured more frequently or sick more frequently, has all these allergic type phenomena.

you can really think about how this child is different from other children because it is a common misconception that if you're not diagnosed in childhood that you must not have these conditions. But I think part of the reason why so many people are being diagnosed as adults now is because we didn't catch these things sooner. So I think we could do a much better job of catching things sooner. And of course, a lot of people think of the typical contortionist doing Cirque du Soleil or whatever, the super bendy ballet dancer. And we know that

ballet dancers, circus performers, a lot of different musicians have higher rates of joint hypermobility and especially generalized joint hypermobility. But just because someone is more bendy or less bendy does not necessarily mean that they do or don't have a connective tissue disorder. We haven't actually correlated that a higher Beighton score or a higher degree of generalized joint hypermobility means that you're more likely to have a connective tissue disorder.

we don't want to rule someone out just because they have maybe fewer and less extreme hypermobile joints. But if you're a teacher or a nanny, first of all, I should say that joint hypermobility is where joints have a greater than expected range of motion. Now what's difficult for children is we have to have norms for age, sex,

actually really by race, ethnicity. So it makes it very challenging to have these norms, because you can imagine how many different tables we would have to have. So it's greater than expected range of motion, but that's where, again, if you're a teacher, you can say, well, gosh, I've seen this kid bend their elbows like 45 degrees backwards, and that's not normal. Plus they get all these injuries or whatever. And also joint instability.

Kate Colbert (11:35.235)

Right.

Linda Bluestein, MD (11:54.926)

is where joints have difficulty staying in proper alignment. So if you've seen a child dislocate their shoulder or dislocate their patella, which is their kneecap, or you've witnessed things where they have difficulty controlling their bodies, or sometimes people call it difficulty organizing their bodies, or difficulty with proprioception. Maybe they're more clumsy than other kids. These are the kind of things that can suggest...

symptomatic joint hypermobility, or more specifically, maybe they have a connective tissue disorder. It's not up to you to diagnose it, by the way. This is not what we're asking you to do. We are not asking teachers and nannies to learn to make a diagnosis. Definitely not. What we are saying is you can help because you are probably spending a lot of time with those children. If you're a nanny, you may be spending more time with those children than their parents are.

So you're making these observations. You're seeing that there's, again, we get back to the mast cell stuff. They have a lot of allergic problems, tummy aches after they eat, various different symptoms. And I will say, one of my favorite lines is, if you can't connect the issues, think connective tissues. So if you're working with a child who has...

various different things going on and you're thinking to yourself, well, how could all of this possibly even be related? Of course, maybe it isn't, but maybe it is. Maybe it's related because it's all related to connective tissue. And it's never too soon for people to start taking better care of their bodies and for parents to start getting information, especially if their child has EDS or Ehlers -Danlos syndrome or HSD, hypermobility spectrum disorder.

or some other condition that causes hypermobility, it is never too soon to get information and to start learning what you can do to optimize function.

Kate Colbert (13:53.923)

Gosh, this is great advice. And I had not thought about what you just said about the fact that teachers, daycare providers, nannies, folks who work with small children.

they have context, they have exposure to a lot of children. So I might be a parent and I might have two or three or four or five kids or maybe just one. Right. And so my sphere of, you know, sort of recognition around what sort of quote unquote normal for a six year old or a 10 year old or a two year old might be limited to just my children or just my children and the neighbor's kids. Right. But when you're talking about, you know, a kindergarten teacher,

who has 30 kids this year and has had 30 kids every year for the last 30 years, right? And he or she knows a lot about what's normal. That is such a powerful thing you're talking about. What does that look like and how could that change the trajectory?

of that young person's life. I often wonder how different my life would have been had I been diagnosed timely. What does that look like if a teacher just says and says at, you know, takes that parent aside or mentions during a parent teacher conference, you know, hey, by the way, you might not know this, but there are a couple things about Johnny that seem a little different than other kids. You know, there's the degree to which, you know, he has a lot of food allergies and the tummy

eggs after lunch. And I've noticed that if he plays on the equipment outside at recess that sometimes just the monkey bars are tearing the skin on his hands and he just seems a little delicate. And yeah, I do notice when he raises his hand to ask a question, his elbow goes backward. And I think there may be something going on there. You may want to talk to his pediatrician. And I think that that's really, really great advice. So you talk... Yeah, go ahead.

Linda Bluestein, MD (15:46.382)

And I realized as you were talking that I forgot to mention a super, super important thing here, and that is neurodivergence. We know that neurodivergence and hypermobility are so incredibly highly correlated. We don't know cause and effect. Correlation does not equal causation. So we don't know what causes what, but we do know that if you have joint hypermobility, you're much more likely to have...

Kate Colbert (16:04.643)

Yeah.

Linda Bluestein, MD (16:15.086)

a condition of neurodivergence and vice versa. So when I say neurodivergence, I mean autism, ADHD, Tourette's, those kinds of things. So teachers are already taught to look for signs of autism or ADHD. So this is just another, like, if you have a child with ADHD or autism, especially, think, okay, well, have I noticed their arms bending backwards or that they're complaining of pain, by the way?

Kate Colbert (16:23.427)

Yeah.

Kate Colbert (16:41.539)

Yeah.

Linda Bluestein, MD (16:43.95)

So, you know, I take a long history when I am first evaluating a patient and it is so common that they will tell me that they've had pain since they were five or seven or whatever. So, if you're working with children and one of them is complaining of pain, not just today, but like a lot of days, that's really significant. Children should not be in pain all the time. So, I should have mentioned that about the neurodivergence.

Kate Colbert (16:53.923)

Yeah. Yeah.

Kate Colbert (17:10.083)

That's a good point. I mean, an incredible point that it's not normal for children to be in pain all the time or most of the time. And I love the talk about neurodivergence. I hope that folks who are listening to this episode about EDS awareness that this also makes its way maybe to some of those professionals who do evaluations at schools for neurodivergence to diagnose some of that or folks who are responsible for developing IEPs because of that interesting overlap.

Linda Bluestein, MD (17:38.062)

Mm -hmm.

Kate Colbert (17:39.811)

those would be good people to have some new sort of high levels of awareness. You mentioned dancers, athletes, etc. So let's talk about athletics a little bit too. So when we think about people who need to be aware about EDS and to know at least a little bit to be helpful to the community at large, let's talk about athletics. So there are a lot of kids and young adults really start to show the signs of connective tissue disorders when they're busy playing soccer.

or training as a dancer, right? Or learning gymnastics or running track and field. So what do coaches and athletic instructors need to know about EDS in a nutshell?

Linda Bluestein, MD (18:20.558)

So similar kind of a thing, comparing against other people and if they're complaining of pain and injury and boy, this person seems to be injured a lot and or having complaining that they're dizzy. Like you could use a good word fragile. I don't want people to necessarily feel like they're fragile, but yeah, oftentimes we are a lot more fragile than other people. So I think that's the first thing. I also really, really want.

coaches and artistic directors to know that just because, for example, a dancer is dancing does not mean that they are healthy. They will push through pain. They will push through orthostatic intolerance or difficulty with upright posture. They're dizzy. They may or may not faint. They may just feel faint. They might not actually faint. But people will push through an incredible amount of symptoms. And

and keep going, going, going until they just cannot anymore. So just do not assume that if someone is dancing or doing whatever their sport might be, that they're fine because they might not be. Also, just know a few resources so that you can point people in the direction of help and mention to the parents, mention to the athlete or the dancer, you know,

I heard about this thing. I heard about this thing called joint hypermobility. It's where joints have greater than expected range of motion or you appear overly flexible. The flexibility and hypermobility are different things, but just make them aware of it and just say, Hey, you want me to check out this podcast, for example, and just listen and see if it seems to resonate with you or if you think any of these things feel like it might be the right fit. And then,

go see a sports medicine doctor or a dance medicine physician. In the dance world, unfortunately, dancers tend to go to their teachers first, and then maybe they'll go to a physical therapist, but they do not want to go to the doctor because they're afraid the doctor's gonna say to stop dancing. But if you go to a dance medicine physician, and there are great resources for this, including IADMS it's IADMS.org.

Linda Bluestein, MD (20:42.51)

It's the International Association of Dance Medicine and Science of which I'm a member. And they have listings for dance medicine professionals. So you can find one maybe in your area or hopefully not too far away. And they usually are former dancers. They're not going to tell you just to stop dancing. They're going to explain to you what they think might be going on and how you can potentially do things differently. So have resources, be looking out for these things, be aware, know your students, your athletes.

and your dancers so that you can pick up on potential problems and have them addressed sooner rather than later.

Kate Colbert (21:19.267)

Great advice. And I love that sort of hint about be paying attention to sort of when they let their guard down. So whether you're a football player or you're a dancer, you might be able to be performing on the stage or on the field, but what happens when they step off, right? Like when they're sort of like off stage, so to speak, or off the field, you know.

Do you have a dancer who can perform in their recital or their performance and the second he or she steps off the stage, you know, they're grabbing for their belly, they're nauseated, they're grabbing for a wall, they're sick, they're going red, they're asking for water after a six minute number, right? You know, so what have they pushed themselves through and where are they starting to fall apart afterward? And is that...

that an indicator that something's going on that they are, like you said, pushing through because they love their sport and they don't want to disappoint their coach or their instructor or their teammates. So we talked at the beginning of this conversation about why EDS awareness is important and you talked about health professionals, but I want to circle back to that for a second. This could be an entire.

podcast series on its own, it probably should be, but let's just touch on that because I want to make sure I didn't miss anything that you wanted to share. So let's just talk just briefly again about your colleagues in the healthcare industry. So you talked about some of the sort of obvious symptoms, sort of, you know, joints that go beyond sort of expected range of motion, those types of things. What are some other things that healthcare professionals, that you think every healthcare professional should know? So in terms of...

you know, trying to sort of spot a zebra, right, you know, in the field, sort of, you know, how to sort of spot somebody with a hypermobility condition, you know, are there three or four or five things that they should have in the back of their mind? Like, if I see these things, something might be going on.

Linda Bluestein, MD (23:12.366)

Well, I have a list of more than three or four or five things. So we'll see how many we get through. So I like to kind of play with numbers and letters. And so I was like kind of thinking about this and I came up with this three by three, three by three, three times three is nine. So I have three about pain, three about treatment and nine about diagnosis myths. Because I think one of the biggest problems is people either don't know anything, which is almost easier.

Kate Colbert (23:15.363)

I'm sure you do.

Linda Bluestein, MD (23:41.454)

when they think they know. It's worse when they think they know because that's where the problems really come in. So we're going to approach this from the standpoint of myths. Okay. So the first three myths have to do with pain. Number one, the myth that EDS and HSD don't cause pain. Of course, that could not be further from the truth. So if you have a patient who has persistent pain, especially persistent widespread pain, please think about joint hypermobility and

this explain this person's symptoms? Because the second myth is that pain relief is not possible. And pain relief is often possible. We want to separate pain relief and function because sometimes we can get their pain improved a lot, but they still have a lot of functional problems and vice versa. So pain relief though is possible. And I think we're going to talk in a future conversation about that in more detail, but it is possible to help someone with their pain.

And number three, that pain care means opioids or nothing. I think a lot of people think I can either prescribe opioids or I can't do anything at all. And there's lots of other things that we can do. In terms of diagnosis, I have nine things. I'll try to get through these quickly. The first one, these are myths again. Number one, that symptoms are limited to the musculoskeletal system. No.

Connective tissue is all throughout the body. So anywhere that you have connective tissue, in the gastrointestinal tract, in the oral pharynx, in the blood vessels, in the heart, like everywhere, inside our cranium, in the neck. People sometimes, I think they think that you can have joint subluxations, dislocations in other parts of the body, but like the neck would be exempt. It's like, no, we have connective tissue everywhere, so we can have symptoms everywhere.

So that's the first diagnosis one. The second diagnosis one is that only geneticists can diagnose EDS and HSD. Other doctors can diagnose EDS and HSD. It does require training and it does take time. But any doctor can diagnose any condition. Now I'm not going to go trying to diagnose ophthalmologic conditions because those are highly, highly specialized. But if you're a family medicine doctor, you can learn to diagnose EDS and HSD.

Linda Bluestein, MD (26:04.942)

So I think that it's important because if you're having symptomatic joint hypermobility, it is really, really, really hard, if not impossible, to get in to see a geneticist unless they suspect or you suspect strongly and you convince them that you might have vascular EDS. Otherwise, getting into a geneticist, as you know, is almost impossible. The third one, the third myth, that everyone with hypermobile EDS looks the same.

Kate Colbert (26:29.155)

Yeah.

Linda Bluestein, MD (26:30.766)

So because right now we are diagnosing hypermobile EDS based on the 2017 international consortium criteria, you know, there's a lot of things that are left out of that. And so we're lumping a lot of people into the same bucket that I'm sure do not have the same underlying genetics. So we're going to have much more uniformity amongst people with vascular EDS or classical EDS because they have clear cut diagnostic, you know, mutations that we're looking for.

hypermobile EDS is a clinical diagnosis. So we're going to have people that look different. So just because they look different though, doesn't mean that they don't have that. Number four, that everyone with EDS has a morphonoid body type, that they're thin and tall. I don't know how this, well, I do know how this myth got started, but yes, some people do, but not everybody does. So if someone doesn't have a morphonoid body type, it does not mean that they don't have EDS.

Kate Colbert (27:18.179)

I'm sorry.

Linda Bluestein, MD (27:27.854)

Um, actually number five, we already talked about the dancers and other athletes cannot have EDS and still dance or do their sport. They can number six, that EDS and HSD are rare. So we know HSD is like incredibly common. We don't have good statistics because that only came out as a diagnosis in 2017, but I bet you if we had some good prevalence studies, it would be very, very common.

Kate Colbert (27:38.243)

Ha!

Linda Bluestein, MD (27:52.782)

The other forms of EDS are quite rare except for the hypermobile type, which again, we think could be like one in 500 people. But we don't really know good numbers on that either. Number seven, that EDS is an autoimmune disorder. It is not. That seems to be a common myth. Number eight, that HSD is less serious than EDS. It is not. People with both EDS and HSD can have...

symptoms that impact every single aspect of their life. Number nine, the EDS does not, if it does not present in a childhood, you can't have it. It can present itself in adulthood or at least, you know, become more significant in adulthood. And the three myths about treatment, number one, that there are no treatment options available for symptomatic joint hypermobility besides physical therapy. Number two, that symptoms are always progressive.

And number three, that your doctor must be an EDS expert in order to be helpful.

Kate Colbert (28:53.059)

This is great. I think you just outlined your book, by the way. When you're ready to write a book. No, that's fantastic. And I think that what I love about talking about myths is that we can't, I think as a community, especially healthcare providers, cannot appropriately shepherd people towards understanding about their health.

Linda Bluestein, MD (28:53.23)

That's my three by three is nine.

Linda Bluestein, MD (28:57.966)

Hahaha!

Linda Bluestein, MD (29:01.87)

Okay.

Kate Colbert (29:18.819)

and diagnosis and appropriate treatment and support and adaptations to improve their life if we're stuck behind those myths, right? If we think, you know, I can't have this because, right? And if doctors are stuck believing these myths, they will perpetuate those myths to the patients, right? And vice versa. I'm sure there are plenty of patients who believe some of those myths that you just outlined. Our parents or teachers or any of the stakeholders we're talking about today.

Linda Bluestein, MD (29:29.71)

Right.

Right.

Linda Bluestein, MD (29:42.51)

Oh yeah.

Linda Bluestein, MD (29:46.99)

caregivers.

Kate Colbert (29:47.331)

who believe some of those myths and say, well, it can't be EDS because, and if they're wrong, then the patient ultimately suffers. And delayed and misdiagnosis is really the root of a whole lot of suffering. So I think that's fantastic. Thank you. Let's talk quickly about a couple of other stakeholder groups before we wrap up. So.

Linda Bluestein, MD (29:51.694)

Mm -hmm.

Kate Colbert (30:12.163)

Let's talk about parents. I think some of this sort of aligns with some of what you were talking about with childcare providers and teachers. Anything else that we haven't covered that you think that parents should be on the lookout for in terms of, you know, how do I know if my child might have a hypermobility condition? And when should I take them to a doctor or a dozen doctors until I find one who isn't stuck believing all those myths?

Linda Bluestein, MD (30:37.262)

Right, right. So I would say persistent pain to me is one of the biggest things to be looking for if your child is, you know, and traveling type pains, you know, one week it's an elbow and next week it's a knee, you know, if it's the same area, then, you know, there could be something focal going on. And, and if you have any doubt, definitely take them in and get it checked out. And maybe you're thinking, okay, well, they have a regular routine checkup in a month. So I'll just ask about it then you can do that.

but please say to the pediatrician or your family medicine physician, please say, do you have time to assess this now or should I come back for a separate visit? Because you don't want them glossing over it and not giving that issue the time and attention that it needs because you didn't schedule a separate appointment. Make it clear to them, yeah, make it clear to them that this is important enough to you that you're willing to bring your child back.

Kate Colbert (31:26.915)

I'm pretty much.

Linda Bluestein, MD (31:34.51)

and you're not just trying to like pile on more things for them to look at during that visit, because they're busy and they're going from room to room and trying to deal with the sick kids that have been added on that day and everything. So definitely if there's persistent pain, really, really important time. And addressing pain early on is so important and so they can be taught like age information, age appropriate information about pain.

Now, maybe they need to see a rheumatologist and have a rheumatologic condition ruled out. Maybe they have juvenile rheumatoid arthritis, for example, or lupus or something. So please, that's one thing I really also want to stress is do not assume that because a lot of these things sound like they fit, don't assume that it's EDS because we also don't want to settle in on diagnosis too soon and be like, oh no, that must be what it is.

and then go in with confirmation bias. We want to have the proper evaluation to rule other things out because the treatment might be completely different. So we want to make sure we do that. If your child has other things going on, headaches, allergic type symptoms, gastrointestinal problems are really a big one. So whether it's difficulty swallowing, heartburn, fullness easily while they're eating, abdominal pain, bloating,

constipation, diarrhea, if they're having gastrointestinal complaints, that's definitely a big one. And again, I think I mentioned this earlier, like dizziness. And I don't know, I'm sure you've heard the saying that we with EDS are canaries in the coal mine. Like we are sensitive to things. So if your child goes with you to Target, not to blame Target, it's not specific to Target, but if your child goes with you to Target and you go down the aisle with all of the perfumed...

Kate Colbert (33:19.107)

I'm going to go ahead and close the video.

Linda Bluestein, MD (33:25.838)

laundry detergents and your child starts sneezing and doesn't feel well or, you know, complaints of a headache or something, you know, chemical intolerance is definitely something that can be kind of one of the first signs of, oh, is there something going on here? Does my child have more sensitive mast cells, which are a part of the immune system?

you know, they're white blood cells that are very, very essential part for life. And they're wherever we interface with the environment on the skin, in the lungs, the vagina, the nose, inside the ears, etc. So if your child is having, you know, environmental sensitivities, that's another thing to, to be aware of and to get evaluated. Unfortunately, a lot of allergy and immunology doctors are not very

aware of and or believe in mast cell activation syndrome, they feel like, oh, you must have to have an elevated tryptase, which is a very highly specific mast cell mediator. And if you don't have an elevated tryptase, then they don't want to see you or even consider mast cell activation syndrome as a possible diagnosis. It's hard though, because tryptase is very thermolabile. So it's very, very hard to get a positive or elevated tryptase on lab testing. So we know that there's other things we can assess.

for that and we know that this is important because of the fact that these conditions occur together so often.

Kate Colbert (34:57.539)

Wow, this is great, great advice. Great advice.

Let's talk about, so sort of moving forward from talking about children and young adults to talking about those of us who are a little older than that. And, you know, one of the things that I hear a lot, and it's a sad thing that I hear, so, you know, I do a lot of coaching and advocating for EDS patients through my work as the executive director and founder of EDS Guardians. And one of the things I hear a lot is that people say that their own spouses or partners or other

Linda Bluestein, MD (35:09.678)

Yeah.

Kate Colbert (35:30.885)

members of their immediate family, they just don't get it. They don't understand the nuances of their complex illness and that's causing emotional hardship and sometimes physical hardship, right? So if you need somebody to help you with tasks around the house or you need somebody to bring you some medicine or take you to a doctor's appointment or to pay for a mobility aid that you might need and they think, you know, oh, you're just being a baby about it or you're just, you know,

and they don't get it, that can be devastating to somebody who has a complex illness and that creates dynamic disability. What advice, and I think a lot of folks don't understand that dynamic disability, right? That, you know, well, but, you know, I don't understand, you know, like, you know, Kate was perfectly fine on Tuesday when I saw her and we went out to dinner, she seemed okay. On Wednesday, she was...

Linda Bluestein, MD (36:16.526)

Yeah.

Kate Colbert (36:26.179)

you know, her face kept turning red and she was wearing a neck brace. And on Thursday, you know, she asked her brother to push her in a transport chair so she could go to that football game to see her niece and nephew because her knee wasn't working right. Like, I don't understand. It's something different every day. Like, are you sick or are you better? Right. And that sort of people don't understand what a dynamic disability is. So what advice would you have for romantic partners or other?

Linda Bluestein, MD (36:44.43)

Yeah.

Kate Colbert (36:51.971)

family for maybe how they can best learn about EDS or how they can be a really great caregiver or supporter to the person in their family who has EDS or a related condition.

Linda Bluestein, MD (37:05.806)

It's hard. It's really, really hard. It's really hard to live in an EDS body. And it is really, really hard to understand what living in an EDS body is like if you don't have one. Just like if you have an EDS body, it's kind of hard to imagine what would life be like living in a non -EDS body or a normal body. I think for people who don't have EDS,

or HSD, it's really, really hard for them to understand. So if you can put things in terms that helps them to understand. So if you could say something like, remember when you had the flu six months ago and everything in your body hurt and you felt miserable for three days and then you felt icky for another five and then you were fine or something like that.

I don't know what your body feels. I can't live in your body. But that to me looked like how my body feels three out of seven days or whatever it might be. Try to put it into terms that they can relate to. Remember when you had your injured shoulder and you couldn't exercise and how miserable you felt and how difficult it was to sleep because you couldn't roll over onto that shoulder and you don't like sleeping on your right shoulder, you like sleeping on your left shoulder.

whatever it might be. If you can figure out ways to put... This is advice obviously for the patient right now, but if you can figure out ways to put it in terms that they can understand, I think it can help them relate to you better. And you want to get on the same team, which is hard. In every relationship,

Each person has their own needs and our needs are often in conflict with each other. And like you said, it's really hard to understand dynamic disabilities for, I think, for most people unless you have one and then you totally get it. But otherwise, it's really, really challenging when someone's needs vary so much from one day to the next. So I think that discussing what your needs are and how you can meet each other's needs in a way that's...

Kate Colbert (39:08.067)

Yeah.

Linda Bluestein, MD (39:24.974)

feasible for you as a couple, if you're partners, and showing compassion and kindness to each other is also hard and knowing that you're going to make mistakes. Say you get frustrated with the other person and you say something that's not kind, apologize. Like the next day or whenever you can, don't be too proud to apologize and say, I'm sorry that I wasn't there for you. I'm sorry that I wasn't more supportive.

I just, it's hard for me to understand what you're going through and it impacts me in this way. And I think too, like using the mirroring type language where, you know, if I say to you, Kate, I'm experiencing, you know, this pain in my head and the way you ignored me the other day and you walked away from me made me feel like you didn't care. It would be helpful if you said to me,

So what I'm hearing you say is that you were having a really bad headache and I walked away or when I walked away from you, that that made you feel like I didn't care. That kind of mirroring I think can be helpful. And I recently learned a technique and let me see if I can remember how it goes. It's a three part, what do they call it? It is a talking boundary and it's a three part thing. So the way you express things, the first part is you say something factual. Like when you walked away,

If that's factually true, when you walked away, what I made up in my head about that, this is the second part, what I made up in my head about that is that you didn't care about me. And then the third part is what I felt about that. Well, I guess that would be the way you cared about, you didn't care about me. But you can say, what I felt about that is that our relationship, I felt fear. You're supposed to say that third part I forgot. You're supposed to say one of like eight primary emotions. So fear, anger, whatever.

Anyway, so learning how to communicate in a way that there's less blaming. When you do blank, I feel blank. Use I language. Say, I feel this when you do that. Obviously, you're going to have to use you in there somewhere, but say it in a way that is less attacking. You should do this. You should do that. I think really helps. Think of things that you can do for each other that can make you feel valued and cared for.

Kate Colbert (41:27.715)

Yeah.

Linda Bluestein, MD (41:52.558)

even though the person who has the health problems, it's going to be hard. There's going to be less things that they can do probably, but having those lines of communication more open, I think is very helpful.

Kate Colbert (42:04.835)

Well, this is really great advice. And I think that I do think sometimes caregivers do they require more care, right? So being in my family, being the sick person, I get a lot of the attention, right? I get a lot of the medical attention and, you know, all of our money goes towards my medical care and all that kind of stuff. And so I think it's important that we take the time to think about our caregivers and our loved ones to make sure that we're and I don't think we should be putting it all in the sick patient, but.

Linda Bluestein, MD (42:13.614)

Mm -hmm.

Kate Colbert (42:34.563)

But is there something we can do to help them understand? And for all of the family members who are listening to this conversation right now, what can they be doing to ask questions? And by the way, as patients, we welcome your questions, right? You know, so I love it when my husband will say like, so what does it feel like when or like, like, what is it like when you dislocate an ankle? And like, I hear you like yelp and pain and you hop and then you snap it back in and then you just like, you know, kind of

Linda Bluestein, MD (42:48.27)

Yeah.

Kate Colbert (43:03.907)

take a couple of stumbles and then carry on. Like, what does that feel like? Or what is that? You know, or my husband sometimes struggles to know, like, should he proactively plate my dinner and bring it to me? Or, you know, am I feeling up for that? And so we had an interesting conversation just the other day. And I said to him, I think it was important that he heard me say this. I said, I hope you know that when I am able to do more things for myself, I will.

Um, and when I'm feeling good, um, I'm going to try to like, give you a break from having to hear give for me. Um, and I want to be able to do things for you. Um, and I like to be able to go get you a glass of water. And when I feel like it, but I hope that you understand that when I'm kind of all propped up on the couch with pillows for my cranios cervical instability and all the things that are, you know, causing problems, um, that, that, that is me trying to provide self care.

Linda Bluestein, MD (43:32.11)

Mm -hmm.

Linda Bluestein, MD (43:36.718)

Yeah.

Kate Colbert (43:59.427)

And that's never sort of laziness. And when I have the energy and the ability to do things, I am always going to do them. So please know that if you see me kind of deferring to you, it's because I need to. And so I think these conversations are really, really important. I love the analogy around, do you remember what it feels like when you have the flu or when you recently had the flu?

Linda Bluestein, MD (44:12.142)

Yeah. Right.

Kate Colbert (44:23.683)

I use an analogy a lot when I talk to people, especially like colleagues or people who just don't know a whole lot about my health, who sometimes need to. And I try to explain to them, you know, that it's not just about joint dislocations, but I'm a pretty frequent subluxer and dislocator. So, you know, five, six, eight, 10 dislocations a day is not really abnormal for me. And so I try to ask people like, have you ever been in a car accident? Like maybe just like a fender bender, right? Or...

Linda Bluestein, MD (44:49.134)

Mmm.

Kate Colbert (44:51.459)

like after, you know, like your neck was really sore for a few days, you maybe had some bruises or you fell off your bike or you had some sort of accident. And that the adrenaline, you felt sort of okay on day one. And then on day two, you woke up and you were limping and you were stiff and you know, your pelvis didn't move the way it should and all hell felt like it was breaking loose in every part of your body. And I tell people that having...

Having EDS for some of us who have been in a body like this for a long time, who injure daily, is like being on day two of a car accident every day of our lives. And when I explain it to people that way, I can see the light bulb go off because people know what that kind of discomfort feels like, that it's maybe not acute pain, it's this sort of just like, it's sort of multi -systemic sort of misery.

Linda Bluestein, MD (45:44.718)

Mm -hmm.

Kate Colbert (45:45.283)

that you have to try to figure out how to push through. And most people on day two of a car accident call in sick to work. And they crawl into bed and they Netflix and chill all day and they take a bunch of Tylenol and they eat comfort food and they stay in their pajamas. And so for people to understand what might it look like for your loved one to be feeling like that, like you said, three out of seven days or every day or a few days a month or whatever their situation is. And yet we expect them to show up to work.

Linda Bluestein, MD (46:08.59)

Right.

Kate Colbert (46:15.043)

to show up to the family picnic, to help make dinner, all those things. And so I think that that's helpful. So I use the day two of a car accident analogy all the time, and that seems to help people understand. So that's my last question for you is about coworkers. So people with EDS and related conditions were sort of, just like anybody else, were everywhere when it comes to the world of work and careers. And there are a lot of us who have...

Linda Bluestein, MD (46:25.294)

I think that's a, yeah.

Kate Colbert (46:43.491)

full -time jobs or part -time jobs or college students or people like us who are running our own businesses. But many of us have workplace colleagues, right? We've got coworkers, clients, bosses, et cetera. And a lot of people don't want to sort of come out as chronically ill at work, right? It took me a long time. And actually, and it took me really until I was...

my own boss where nobody could fire me that I felt really comfortable. And I'm still a little uncomfortable. I don't I rarely wear a neck brace in front of a client, even though I really should to be protecting my brainstem given my CCI. What should we tell people that they should be aware of no matter where they work? Maybe I'm on a team somewhere and there's an EDS person on my team or there's an EDS or who I supervise.

and I know it. So let's just assume we know it, right? So somebody on your team, you work with that work or somebody who you employ has told you they have EDS, HSD, Marfan, some sort of connective tissue disorder or some sort of hypermobility condition. I don't need, I'm not, we don't need to go become an expert in it because we've got other business to do, but we have this employee who seems like they have some health issues going on and they've shared with us they have this condition.

What should coworkers or employers need to be aware of when it comes to EDS? And I'm not specifically saying about, you know, the HR part of the FMLA, but if I have an employee, are there certain types of grace I should maybe give them or understanding or patience or, you know, what should I know about my employee who has EDS?

Linda Bluestein, MD (48:21.774)

Yeah.

Linda Bluestein, MD (48:30.19)

Yeah, that's a that's a really good question. I mean, I think, you know, checking in with them, especially if they seem a little off, you know, because sometimes something as simple as taking a break and getting extra hydration or something can be very, really helpful. I really like your analogy about day two of a car accident. I feel like that's a really good analogy. And you're right, I probably shouldn't have said three out of seven days because, you know, I mean, it's

probably closer for most people of like 6 .5 out of seven days. It's like for half a day, maybe I feel pretty good, you know. And people with EDS and HSD are like the strongest people that I know. And, and Marfan's, you know, I mean, it is amazing to me the things that people...

managed to push through. It's just mind boggling. There was an article written by I think it was Clair Francomano and also Colin Halverson and we talked about it on the podcast when I interviewed him. Well, there was the clinician traumatization article but then this one was the article about a hero's journey. And it is so the diagnostic Odyssey being a hero's journey and I don't remember the exact title but we'll look at it the show notes it is so so true.

Kate Colbert (49:36.803)

Yeah.

Linda Bluestein, MD (49:43.758)

I really believe that people with EDS and HSD are heroes. They really are. They are so strong and they are, their connect, their tissues are weak, but their spirits are strong and they are so inspirational. And the way that they keep going, despite having so many problems, like you're saying, like multiple dislocations in a day, like, thank God I don't have EDS to that, to that degree. So, you know, it's,

checking in with a co -worker and showing that you care even simply by asking that kind of a question, how are you really? Adding that word at the end, how are you really? I think can make a huge difference. Or just saying, just wanted to let you know I was thinking about you today.

can be really, really simple. And if they want to talk, great. If not, that's okay. Yeah, offering a little bit more grace in terms of if they need some special concessions. I remember when one of my children was starting college and he needed extra permission to bring a water bottle. It's college. I can't believe you can't, yeah, that you can't bring a water bottle. But with POTS, you have to be able to do that. So I think just

Kate Colbert (50:58.467)

Yeah.

Linda Bluestein, MD (51:05.102)

realizing that sometimes small things like that can make a big difference. And it's important for people to be able to give back to society. And we can only do that when we have workplaces that are more accommodating and, you know, talk again, lines of communication. Like we don't ask early enough and we don't ask for these things early enough. So also I think the other big thing, especially for employers,

people are not going to ask for things unless they really, really, really need it. Because people don't like to ask for help like that. They really don't.

Kate Colbert (51:39.875)

That's just great advice. And if anybody is listening on a favorite podcast player and is not on YouTube, if you would like to see me cry, this is your time to go over to YouTube. Because that's emotional for me to hear you say that, Doc, to acknowledge how hard it is to have this condition and to continue to push through it. You know, one of my...

favorite phrases and I think this is maybe something to know if you work with somebody who has EDS or a related condition is that they are sicker than they look and stronger than they feel. Right? And so, you know, you said, you know, it's sort of it's no secret probably among people who sort of know me through you or whatnot or know you through me, you know, or that

Linda Bluestein, MD (52:12.558)

Yeah.

Kate Colbert (52:29.795)

that I'm one of your patients and at your, I think it was our very first appointment, you put in my after visit summary, you are capable of difficult things.

And I will never forget that. I remember going on a hiking adventure by myself on what's called the cord walk or this sort of floating sort of walkway over some sand dunes along Lake Michigan and Sheboygan, Wisconsin, and did that in very cold weather by myself. It was very difficult. And I was so proud of myself. And I made like a live video while I was there for you. And I barely knew you, right? You were this brand new doctor who I just started consulting with. And I remember thinking,

Linda Bluestein, MD (53:05.582)

Oh.

Kate Colbert (53:13.283)

that had you not said that to me, I would not have believed I could have done that. And so that I think is important. And I would also say to folks, I just went on a campus tour at a university and the tour guide was young and clearly quite healthy or appeared to be at least. And she never thought, and I gave her this feedback afterward.

Linda Bluestein, MD (53:31.214)

Yeah.

Kate Colbert (53:38.307)

She never thought to say, and I'm going to go ahead and go up this spiral staircase. And if you want to follow me, go ahead. And anybody who'd like to take the elevator, there's one right around the corner and we'll wait for you at the top. So there was never a mention of where is the elevator or the ramp and that we'll wait for you. And so for those of us who needed an elevator, we're fumbling to try to find one or we were struggling our way up and down the stairs and we were always in the back of the pack on the tour. And so.

Linda Bluestein, MD (53:52.75)

Yeah, yeah.

Kate Colbert (54:05.187)

That happens in workplaces a lot too. So for people who are showing up to physical workspaces where there's lots of stairs or you're being scheduled for appointments across the corporate campus and people expect that you can get from point A to point B in five minutes. Well, maybe that's a reasonable sort of passing period for a really healthy person, but it may not be for your colleague who has EDS. So really sort of understanding that.

Linda Bluestein, MD (54:07.342)

Yeah.

Linda Bluestein, MD (54:18.99)

Right.

Kate Colbert (54:31.939)

that their condition says nothing about their competence, their character, their commitment, their capability to do their job, but it does sometimes say something about the way they need to show up to work or the way that they do their work or the accommodations they need. So I appreciate that. So, wow, I love this conversation. I'm so glad that we did this. I'm so glad that EDS Awareness Month gave us an excuse to talk about.

how we can increase awareness across all of these important stakeholder groups beyond patients and beyond doctors. So I think that this conversation is a really great start to bringing more people in the EDS community and to support patients through these medical odysseys. You use the word odyssey, I think, and journey. And I love the word odyssey because sometimes a journey sounds like fun, like you're on an adventure, you're going on a vacation. And this is really more like, you know, I mean, there's, you know,

Linda Bluestein, MD (55:21.678)

Yeah. Right? Right.

Kate Colbert (55:28.611)

It's more like an odyssey, right? And I do think that awareness is vital because awareness precedes empathy and support. I cannot help somebody who has EDS if I don't understand what EDS is, or I don't even, I've never heard of it, or I don't know how to spell it, right? And I think that as we have more empathy and support for people with EDS and related conditions,

Linda Bluestein, MD (55:31.022)

Yeah.

Kate Colbert (55:55.075)

we can create better partnerships towards supporting them through their treatments and their interventions. So I'm really hopeful that everybody who's listened to this episode will go grab a link for it at BundyBodiesPodcast .com and send it to someone in your life who needs to hear it. So maybe it's a second grade teacher, maybe it's a coach, maybe it's a manager at a workplace. So think about the people that we talked about in this conversation.

who needs to know about this and how can we sort of come together and dazzle as we say in the zebra community and spread awareness about EDS and related conditions. So please, please, please send this to folks. As Dr. Bluestein said a little while ago, it is believed that the prevalence of hypermobile EDS is actually quite common. It may be as much as one in 500, which means that in the United States alone, there are at least 67 ,000 people and worldwide we're talking about.

hundreds of thousands, if not millions of people who are struggling with EDS and other connective heritable connective tissue disorders every day. And so we cannot do this alone. People who are struggling with EDS cannot make the world a better place and cannot be supported in the way that they need in and of themselves. We need all of you, which is why we need you to be aware. So thank you so much. Thank you, Dr. Bluestein for letting me come.

sit in your seat for a moment to guest host your show. It's really an honor. Everyone, by spreading awareness, we can spread better health and we spread hope. Happy EDS Awareness Month.

Linda Bluestein, MD (57:21.87)

Ah!

Linda Bluestein, MD (57:34.19)

Yes, and what I do want to have one other thing I want to say before we hang off. And that is that this also helps other people with other poorly recognized conditions. So whether it's EDS or something else, there's a lot of similarities, there's a lot of overlap. So don't worry about, you know, is this as relevant to this person's, their situation, their family situation, whatever.

I really think that it's learning how to communicate and a lot of these other things that are just beneficial for everyone. And Kate, I'm so incredibly grateful to you for giving me this opportunity to share some of the things that I want people to know about for EDS Awareness Month, but I want to ask you a question before we hang off. And it wouldn't really be a Bendy Bodies' podcast episode if we didn't have at least one hypermobility hack.

I know people are always like hanging on for that hypermobility hack. So I want to ask you if you could share with me one of your favorite hypermobility hacks.

Kate Colbert (58:28.835)

Yes.

Kate Colbert (58:36.131)

Oh, you're right. It would not be a Bendy Bodies episode without a hypermobility hack. So I'm glad we remembered. Yeah, so one of my favorite hacks is what I call the cheater drawer in the kitchen. So a lot of folks with EDS really sort of struggle because we can go beyond end range. Sometimes we're reaching up into the upper cabinets in the kitchen to grab a plate. And so sometimes that's causing us to go up on our toes for people like me who aren't super tall or we're pulling.

our shoulders out, causing thoracic outlet injuries, all kinds of things that can happen when you stretch your arm sort of too far out of that shoulder socket. I'm one of those patients whose humeral heads are almost always out of the sockets and I have them put back in by my PT every week, which is life changing. I feel like a different person when my arms go back into the socket. And so we created what we call the cheater drawer at our house. And here's how it works. So you find a drawer in your kitchen that's right there at the...

right below the counter level. So right there at waist level and you empty it out. Maybe you have a junk drawer that you could just throw all that junk away or sort of move it out and create a drawer that's for you. Line it with towels and then go ahead and fill it with one of everything that you might need on a bad day when you can't bend down to get into the low cabinets and you can't reach up into the high cabinets. And so that drawer should have,

Linda Bluestein, MD (59:56.718)

Yeah.

Kate Colbert (59:59.555)

One big plate, one little plate, one cereal bowl, one little bowl. It should have a small drink glass, a coffee mug, a big drink glass, all those things that are in high cabinets or low cabinets. So you might have a set of 12 glasses. One of them should be in your cheater drawer. And every time you do dishes, you should be making sure that the cheater drawer is filled back up and is fully stocked.

The cheater drawer is something we put together in our house when I had a thoracic outlet injury and could not reach into the upper cabinets. And I don't need it every day and I don't need it every month. But we will never retire the cheater drawer because you never know when you might need it. And you don't want to be rearranging your kitchen when you are acutely injured. And so you want to have that cheater drawer. And so that has been life changing for me. Other things you can do is 3M hooks, put things closer. So if your towel bar

outside your shower is a little bit far for you to reach when you're reaching when you're wet. Get a 3M hook and just put it right next to the shower so that you have a towel hanging right there or a jacket hanging right. I've got a hook right next to my desk in case I'm cold, I can grab my sweaters right there. I don't have to get up and go look for one. So put success in your way. Put things closer to you.

Linda Bluestein, MD (01:01:13.486)

Yeah.

Kate Colbert (01:01:15.907)

and have them surrounding you, your neck brace, right on your desk, whatever else. But the cheater drawer is kind of a good theme to get you started on how to move the things that you need for activities of daily living to be closer so you can be more independent without having to ask for so much help. And that's been really helpful for me.

Linda Bluestein, MD (01:01:35.118)

I love that. And that's something I should have thought about earlier when we were talking about caregivers, because being solution focused, I think, and coworkers too, like it demonstrates that you're not trying to just be a burden, you're trying to come up with a solution. So working together to come up with a solution is such a fabulous thing to do. And I love the cheater drawer. That's brilliant. So.

Kate Colbert (01:01:41.187)

Yeah.

Yeah.

Kate Colbert (01:01:54.115)

Yeah. Yeah.

Kate Colbert (01:02:02.499)

Hacking your way through hypermobility. Sometimes it's all we can do.

Linda Bluestein, MD (01:02:04.078)

Yeah, thank you for sharing that.

Linda Bluestein, MD (01:02:08.91)

Yep, yep, exactly. All right. Well, thank you so much, Kate. This was super fun. And I really appreciate you being the guest host. It was fun to sit in the other chair for once. And yeah, this was the Bendy Bodies with the Hypermobility MD podcast. And you've been listening to Kate Colbert interviewing me Dr. Linda Bluestein. So thank you so much for joining us and we'll see you next time.