Hypermobile Ehlers-Danlos Syndrome: Challenges, Accommodations, and Care
Kara Wada, MD: Welcome back everyone, and warm welcome to our new listeners. This is the Becoming Immune Confident Podcast, and my name is Dr. Kara Wada. I am a board-certified pediatric and adult allergy, immunology, lifestyle medicine doc, and systemic Sjogren's patient, and I am so excited to bring you an expert today.
Dr. Sarah Cohen Solomon is a general pediatrician at PRISM Spine and Joint where she treats kids and teens with Hypermobile Ehlers-Danlos syndrome. I have to say, Dr. Sarah, this has been one of the most frequently asked about topics for us to cover on the podcast, so we're so excited you're here. She also treats related conditions like dysautonomia, which we'll talk all about, POTS, MCAS or mast cells, spine instability, and chronic pain.
And this interest stems from her own lifelong experiences with Hypermobile EDs. Dr. Cohen Solomon seeks to bring high quality, nuanced, and sensitive care to children, adolescents, and young adults, as well as raise awareness for these conditions. She's also an advocate for disability rights, especially for children and adults with disabilities that affect school and education.
Thank you for taking time out of your super busy schedule, Dr. Sarah to join us today and to share your zone of genius with us. How are you doing today?
Sarah Cohen Solomon, MD: I'm great. Thank you. It's so nice to be here.
Kara Wada, MD: Awesome. Maybe we can start by just sharing, how did you find this amazing little niche of medicine?
Dr. Sarah & Ehlers-Danlos
Sarah Cohen Solomon, MD: It was one of those things that the universe wouldn't let me out of, so I got my diagnosis of Ehlers-Danlos while I was a college student. It had been several years of searching for answers, as is very common with this condition. And years of the gaslighting, good times.
But during that period and there had been significant ups and downs. I kept putting one foot in front of the other towards this goal of medical school. And I remember, I would say to friends and family that I was just gonna keep on trying until something kept me from the goal and then I would do something else.
And lots of stuff was thrown in my way and just kept kicking it as best I could. And one day turned around and realized I'd done it, I'd done medical school and done residency. And that's a very short way of describing a very long and difficult process. But when I finished residency, my husband who is in non-medical academia and is very beholden to available postdocs at this time in his career was like, "Surprise! We're moving to Canada". And I went, "Oh, okay". I had the Whither thou goest line in my head and we're very equal in who, who goes where and when but this, there was no option. So we were figuring things out and as we were figuring things out, I got a surprise roadblock of not being able to quickly and easily get licensed here since we're only temporarily in Canada. So I was looking around for other options and there was one option here that was gonna be very heavily Ehlers-Danlos related and then that fell through.
And then right as I'm like, what am I gonna do? I'm in a different country, I can't practice da, da, da, my now boss' articles about PRISM and the genius that she created, started coming out in the papers. Of course every friend I'd ever made was like, "Sarah, you're not the only doctor with Ehlers-Danlos. You have to meet this person. So one Facebook chat later, and she was like, "I'm pretty overloaded right now. I can't necessarily offer like true mentorship, but if you're looking for a job, I can offer you that".
And I was like, "That would be better actually than anything else I could ask for"
So there we were, and we really click ed. I can't say good enough things about her and the practice that she has created, but I work part-time, I go up and back, and while I'm there, I get my own treatment.
So when I say that I support what we do at PRISM, I really mean that. I like what we do at PRISM. My body appreciates what we do at PRISM. So it's a very special and very unusual route to a uniquely perfect for me kind of situation.
And so I'm their first full-time, or I work part-time, but I'm the one who treats pediatrics full-time. And I love it. It's really a surprise dream come true in being able to use what I have learned about functioning and thriving in my body to help other people when they get to the desperate point of needing to go outside of the usual system. Cuz we're one of the types of clinics that hyper specializes and does the two hour appointments. And in order to do that, we are unable to accept insurance and it's painful for all of us.
We wish we could, but we cannot give good care within a very broken system of insurance and billing. But on the flip side, we get to spend a very long time getting to know our patients which I love. And all those years of difficulty on my end means I get to do something really special now, and that's pretty irreplaceable.
Long story short, here I am and it's very good. It's very good.
Kara Wada, MD: It is amazing to me. Not being someone particularly religious, a little spiritual, right? But like about how sometimes the universe aligns in these really cool ways. That's an awesome story and I'm glad that things have worked out in such a positive light. I hope that continues too.
Sarah Cohen Solomon, MD: Thank you. Me too.
What is Hypermobile Ehlers-Danlos?
Kara Wada, MD: Maybe we can start, those who are listening who are not familiar with Hypermobile Ehlers-Danlos, we did an episode a couple weeks ago talking about how this population is complex and experiences a lot of gaslighting, but we didn't talk quite as much about who has it, how's it diagnosed, what symptoms are folks experiencing?
Sarah Cohen Solomon, MD: Yeah. So to answer the first part, who has it? Anyone can have it. I think right now there's an unfortunate overemphasis on young caucasian women. And that really does an enormous disservice to people of color in particular, because as you can probably see, I glow in the dark.
This is a very classic, pale, almost translucent appearance to the skin. And while that's not in the criteria, it's a little bit of like a buzz to, if I walk into a room with a patient curious about the diagnosis, and I'm like, "Ooh, she glow in the dark too". Suspicious, not a diagnosis, just a little thing in my head.
But that's not the same for people of all various skin colors and in particular, we don't get a lot of imagery. If you search Google for images to represent what you're looking for in the diagnostic criteria very few images will come up that are not white. And that's a problem and does a disservice for the diagnostic purpose because it won't always look the same.
So what I usually look for and admittedly in my practice, people are coming to us after being denied and doing, I know this is a trigger term, but doing their own research. And I genuinely believe that if it weren't for the research that they and their families are doing, I have had genuinely suicidal patients in waiting for this kind of diagnosis. So I want that real clear that this is not light, unfortunately. So in the absence of that kind of desperate situation, we look for people who are having chronic pain without any other clear source.
And I hate diagnoses of exclusion because it means you have to go through the rigamarole before you can get a darn diagnosis. But we have to remember medicine hasn't finished figuring everything out. So in 2017, the criteria were updated to actually make it easier for general practitioners or like primary care doctors, for example, and non-specialists to make the diagnosis carefully.
It didn't really work out that way, but it's a lovely checklist if you want to look it up on the Ehlers-Danlos Society page, the criteria of 2017. It didn't work that way cuz people looked at the list and go, " I don't know if I'm comfortable with the things on the list" and that's too bad. Cuz it was really meant very well, and I respect the people tremendously who were on the committee, but they're redoing it. So stay tuned. Because it didn't work out perfectly but that's okay. That's science. So on this list, we have a bunch of different things and I wish I could give a little visual here, but we'll go through it anyway.
The Ehlers-Danlos Checklist
Kara Wada, MD: We can link to it in the show notes too, so that if want to take a look, then they can pull it up as well.
And when we post this on YouTube, actually the team may be able to put up some graphics to help out as well. Been trying to help improve accessibility as we can with our small team.
Sarah Cohen Solomon, MD: I love it. I love it. In any case, it's essentially a checklist, but obviously there's nuance to what's on the checklist. So the first portion is, are you hypermobile? And currently the best way of assessing that is through something called the bait and scale. And depending on your age, your gender assigned at birth and other factors about like skeletal maturity, for example you'll be organized into which number you need in order to be called hypermobile. We do take into account your history. So for example, you're 45 and you've had eight knee surgeries and your knees don't do what they used to, we need to know that. So there are some ways to add back some points, if you will. Now one thing that I do is that while I'm assessing the joints for hypermobility, I also check to see if they're actually dislocated.
Because if a joint is dislocated, it's not gonna look right on this scale. And I fear that I don't know that's taught anywhere. It's just something I picked up from Dr. Zingman. So if I have the skill to put it back into alignment, I will try to do that. If not, what I do is I'll give them a course of physical therapy, the way we approach it so that maybe we can get things back into alignment. And if not, hey, they've benefited from an excellent program, it doesn't change their outcome in terms of the diagnosis. It's not a loss. It's still information. But not infrequently, I find that as we proceed through one of these approaches all of a sudden their score changes. So those scores are not as quantifiable and objective as we wish they were. So that's too bad. But onwards we proceed.
So then the next section is talking about other organ involvement basically. And that includes things like how soft is your skin? How stretchy is your skin? Have you ever had organ prolapse? Do you have certain types of stretch marks that weren't related to big changes in weight? Things like that. And then additionally, we talk about if you've ever had an echo of your heart? Do you have aortic dilation, for example, where the the root of that big vessel is a little too big? Although that actually happens very rarely. So some of the criteria might be changing with that in the coming future. So we'll see. But let's see, what else is there on that list? Wingspan is on that list, finger mobility, if you can wrap your finger all the way around your wrist and have it overlapped. So it's gotta be overlapping by a full knuckle. That's the rule. So it feels, and I always warn my patients that they feel a little bit like a lab rat during these exams. But I think it adds a little bit of levity too, because they've already been through so much. And I hate poking and prodding at people who have already been traumatized like that.
And then the final piece, and I genuinely find this unfortunate, is that the last piece says that it has to not be better explained by another disorder. Which makes sense, but at the same time, a body can have more than one disorder. So I do find that to be a scapegoat that probably leaves some people out of their diagnosis. And I'm hoping that as they go along with better diagnostic criteria and better genetic testing and things like that, that we can do better. But that's not unique to Ehlers-Danlos. That's just because we haven't finished all the learning science yet has for us. Yeah. So that's a quick and dirty of the 2017 diagnostic criteria. And it's a long exam, which is why I really value having our long appointments. But what's important to understand is that if you have enough of these check marks and they're like, if you have five outta 12 here and two outta oh,
I'm sorry, I forgot the most important part down at the bottom of section two is, "Do you have chronic pain in certain ways and do you have instability of the joint? For example, like a dislocation that happens without a trauma". And there's debate that may be, those two pieces need to be worth more points, for example.
Because the other thing at the bottom of that list is do you have a family member who's been diagnosed according to the 2017 criteria? So you can actually get your diagnosis without as many symptoms if say your twin sister has the diagnosis already. So that creates sort of an an imbalance of who can access care as a result and that's too bad because people are suffering and we should. We should make that better.
Kara Wada, MD: Yeah. If there's already inequities in not being able to pick up some of those folks.
Sarah Cohen Solomon, MD: Exactly.
Kara Wada, MD: You're just missing out from that pool.
Sarah Cohen Solomon, MD: Yeah. Fortunately, the people on the committees are working very hard and it's full of people that I respect tremendously.
Some of whom have been my doctors, some of them have been my sister's doctors. All of whom are people whose publications I read regularly. So I know that the future is in good hands. It's more that data often lags behind what we see clinically, and that makes it really hard to write good criteria.
It's not for want of trying or heart or anything like that. It's just a frustrating experience for everybody.
Kara Wada, MD: Yeah. And science as much as we want it, progresses at a relatively slow pace most of the time.
Sarah Cohen Solomon, MD: Yeah. And unfortunately I worry that's where a lot of the gaslighting comes from because there's so much emphasis on being evidence-based, but evidence lacks, we didn't have evidence that asthma wasn't anxiety until what, like 1965.
It was still the same disease, but we didn't know what was, I think same kind of era that we finally learned that endometriosis was real. So it doesn't mean that it wasn't real all along. We just didn't know.
Kara Wada, MD: And that is my fear of what I see in here with mast cell activation within, and I haven't talked about this publicly in part because. I think it is something I have been a little fearful of talking about on the podcast because it is something that is very debated amongst my peers in allergy immunology. So mast cells are allergy cells, immune system cells, that I will tell patients, back when we were cave women , around the campfire, those allergy cells weren't for the purpose of allergy, they were to fight off infection. And it's really been in our modern existence that we have attributed the symptoms they create when they are triggered or they essentially pop with allergy, but they can pop for other reasons too. In particular, irritation from particular, sometimes the fabrics on our skin or pollen counts that are too high in someone who is non-allergic. And other all sorts of reasons, infections. And we have seen increasingly, these cells and another type of traditionally called allergy cells, eosinophils, misbehaving in various ways in different ways over the last 50 plus years. In particular, a condition called eosinophilic esophagitis didn't exist technically when we were born and now it's very common. We know quite a bit about it. And so that's where I worry that, MCAS for the most part occurs in or we have patients who are coming in who are very often gas lit for the conditions they are coming in. And I think that is adding to the delay in figuring out exactly what is causing their symptoms and how can we best treat them.
Sarah Cohen Solomon, MD: Yeah, I couldn't agree more. It's so challenging when we're in the unknown. And especially at academic centers, they have a responsibility to be academically and data driven. There's no question about that. But it means that you think you're going to the person who's gonna be the best one to diagnose you. And that's not necessarily the person looking into the weird little dark corners of the unknown. And the one little case report that might be the answer to everything for you. And that can be really challenging. And we end up ostracizing each other and that stinks because we should be working together to figure out what needs to be done.
What a waste of resources, but especially, I know there's some growing literature about whenever we put something into a chart about a patient in terms of what we believe it gets propagated, right? So if I put something remotely biased into a chart that says "Hey, this other provider should look into this and be like, eh, I don't think they're telling the truth, or, eh, I think they're whatever".
Those words that I don't like using. It's gonna stay there. People are gonna see that and the next person try as they might, is gonna be biased. And that's its own problem. So it's really hard. These things are really hard.
Kara Wada, MD: Absolutely. And I think that happens so often.
One of our own colleagues wrote recently on Kevin MD about her own experiences of essentially being blacklisted within the healthcare system because she was trying to advocate for her own invisible illness situation she was struggling with. And I think what is extra humbling is when you are already aware of how the system works and you have the education, you have the means and the insurance and the wherewithal and everything and you still fight against the system so much that it's "Oh, geez, Louise".
Sarah Cohen Solomon, MD: Yeah. There's so you mentioned not being religious but I am and my family always appreciated. There's a particular concept in Jewish law that roughly translates to all the more. So if a particular rule applies in this normal everyday situation. And then you apply within a holiday situation all the more so that rule applies. And I just feel oh gosh, if this is happening to the doctors, the people who can speak the lingo and address the part and all those things that code switching and things like that, that you can recognize, ah, this is my colleague, they know things and we are still treated like that. I wrote my own article and Kevin MD with over the summer to the same effect where it's was like, I am a physician, darn it. Why don't you believe me? And if I get to say that and someone else doesn't have that clout what do we do? And this is the answer by the way. We raise our voices, but we do it together so we can't get too individualized because there is backlash and that's terrible. It shouldn't be that way.
Kara Wada, MD: Going back to that idea of the outliers and for maybe more forward thinkers, like we actually have a bias that we teach our medical students about, called the Semmelweis effect to describe this situation. Dr. Semmelweis is the doctor who said, "Hey, we should be washing your hands before we deliver a baby. Since we are in the autopsy suite in between these deliveries". And he was ridiculed to the point where he had a terrible demise of his career and his life pretty shortly thereafter. And unfortunately, we know history has this tendency to repeat itself.
Sarah Cohen Solomon, MD: It's too true. It's too true. I agree with you. I think it's all in good faith in a sense. Doctors want to be doing a good thing, and I think it's important to remember that even while we discuss these things, because we want good outcomes for our patients. We want to be scientifically based. We don't want to be selling snake oil. Those are good things in theory. But we also don't want to be the one voice that stands out either because God knows, while we get to this point by having the high credentials, we don't get to this point by being true outliers.
We manage to write the right essay, not the, "Hey, I'm an outlier" essay. I remember when I was doing, when I was applying for residency, my trek through medical school had not been smooth and simple and I was getting really solid advice on how to do my applications in order to address the things that looked bad on my application. And one of the pieces of advice that I think applies here as well was so sad and yet so important where I just needed to prove that I could be a workhorse despite my own illness. I needed to prove that and nothing else, and that, "Oh my, yes, my story got me some sad points and things like that. But at the end of the day, I'm just inspiring enough that I can assure them that I will be a good worker". And that is a terrible thing to have to tell somebody to write. But I was told that, and when I have mentees, I explain that to them as well, not because I think it's okay, and I try to be very clear about that. But if the goal is to get what they want, which is the good position, that's the game you have to play. And that applies all the way up through the rest of academic and general medicine because we're all in it together. We can't be the one voice. And some of us have to so it's really tough.
There are no simple solutions here, but our patients are relying on us at the end of the day, and that's where we get places like PRISM just to bring it back there. One of my patients recently described it as a haven for Ehlers-Danlos patients. And I was like, "Yes". And then I told my boss that's how it had been described. And she was also like, yeah, that was it. Yeah, that's right. Yeah. It's a safe space is what it is.
Modalities in Treating Ehlers-Danlos Syndrome
Kara Wada, MD: Can you share what an evaluation would look like or types of modalities that are used in treating folks with EDs?
Sarah Cohen Solomon, MD: Sure. So like I said it's really remarkable that we have the two hours to get to know someone. And I am often saying, "Okay, I need to find time with you next week to complete this conversation cuz there's more background that we need". And I think like the highest compliment I've received recently was a parent saying that they had learned more from me about Ehlers-Danlos in that first two hour appointment than they had through their whole journey. And I cried, and I'm okay with that. Because it's so meaningful just to understand what's happening to your body, but in the 15 minutes that granted anywhere else, that's impossible. I think your whole first season was about that. Like you just don't get this information.
So a lot of what I do is education. Because if you don't know what to expect from your body and you're only learning from peers online, cuz you have to remember the stuff you're gonna see online is about the worst stuff you're gonna see. Not all the stuff you're gonna see.. Yeah, and that's totally fair and that needs to be said as well. But I always give that little bit of a caveat so that especially so that parents know where to understand the boundaries. So I do a lot of education. I will offer interventions like medication depending on what their needs are. Some need pain medicine right away. Some are doing all right and don't really wanna go there. I will always start with physical therapy, that's non-negotiable. It might need to be delayed until after your school play so that I don't break you in the meantime. But we'll always need physical therapy and it's important to understand, when I say physical therapy, really the whole gamut of manual medicine. And that really starts with an understanding that our pain largely comes from poor compensation habits. So if your connective tissue literally isn't holding you together properly and you sprain your ankle, the ankle might not heal very well. And then you're gonna be spending the next three years walking funny. And by the time you get to me, your shoulder might be hurting. But it might be because three years ago exactly. So if you've three years ago sprained it and you never straightened out, that's a problem. But now your joints are unstable. They've been unstable this whole time. And that's part of the underlying issue of connective tissue not doing their job.
So we always start with alignment and we can't do any sort of strengthening until you're aligned. So we start there and then we stabilize you. And a lot of that has to do with what seems really basic. So relearning how to breathe. A lot of my patients come in with really severe rib dysfunction, so their backs hurt and their ribs hurt, and part of it is because the ribs are dislocated and so they've been breathing really shallow for their whole lives, and I can barely hear breath sounds on their backs, like it's not a pulmonary problem. They're just not using their intercostal muscles to move those areas, so they really genuinely need to relearn how to do that. That takes time. So we can't stabilize all of that into place until it all happens at once. So I end up describing it a lot. If you have a jumble of necklace chains, you're never gonna take one out just by tugging. You have to tug a little here, then find another one, tug a little there, and eventually it comes out and it'll be okay, but it's gonna take some time. So we have to go slowly with each little component. So we slowly build up that stamina with the alignment and stabilizing before we start doing strengthening.
So our approach does not look the same as standard physical therapy. And physical therapy is trapped in the same problems as the rest of the medical system. Usually it's used, you have an injury, you go in you get your exercises, you fix the injury because it's been six weeks, so it means it's fixed so off you go, that does not work with a body like this. You have to expect that one, I can't fix your tissues at this time. There's no genetic therapy that is going to fix the actual underlying problem. Your connective tissue is the problem, but it can make what happens because of it much, much better. I can make your life better. And that's an important concept that I need to explain to people.
So anyways, so we do our rehab, and that also includes, for example, osteopathic manual manipulation which a lot of people don't understand and think is really the same as chiropractic medicine and I'm terrible at explaining it, so I'm not even gonna try. But it's really important. I try all the time. But essentially it's the way it's used at PRISM is very gently using fascia to manipulate your alignment. And again our, Dr. Shaz is our osteopath and he is beyond magnificent. And he really looks as I do, as we all do, at the whole body. So we're not saying, oh, you're coming in because of shoulder pain. Let me focus on your shoulder. We're looking at all of you, because that's what's necessary.
Without going into every detail about every role that we have at PRISM. We have athletic trainers, we have physical therapists. We've recently started additional it's a sort of a step between physical therapy and exercise in a sense, and it's called Physio Line. And Dr. Zingman has been working hard on that program for several years now, before launching it just recently. And we're really excited because it feels like a launching point of people who have worked really hard and can be that extra bridging step to feel more normal. And it's not just physical therapy all the time. So it's exciting to see that and I think a lot of our patients are really excited about it too. So that's a taste of what we do. I could talk on that subject forever of what do we do about this? But let me take a sip of water that's important for the moment.
Kara Wada, MD: Yes. And I have mine here too. I'm right there with you. And I imagine you're also having to screen for some of these other conditions that seem to travel in the same herds.
Sarah Cohen Solomon, MD: Yeah. So I don't necessarily screen everyone right off the bat, especially cause two hours sounds long, but it's never really enough. And usually most people don't want it. It feels a lot like trauma dumping if I diagnose you with all the things in one go even if I suspect you might have all the things in one go, I try to start with whatever I think is gonna make your life most better right from the get go. And sometimes that just means I diagnose Ehlers-Danlos and I stop there and we say, "Hey, we're gonna have a follow up. We're gonna talk more about other things, but let's start here".
If I know that I'm not going to see this patient in person again for a while, and I'm frightened like I have concerns for example, about spinal instabilities, then I will stop the clock and I would say, "Okay, before you leave town, I need to do this because you're in danger and we need to get this taken care of".
If I have a suspicion, if someone keeps mentioning headaches, for example, I usually pull out my screening tool and I'll say, "Okay, let's go through the symptoms that might relate to spinal instability, because that might be more of an emergency". Mast cell dysfunction is not usually an emergency unless they're actively in anaphylactic.
So usually I can wait on that. But if they're talking about rashes and skin sensitivity, I'll make a little note in the chart, be like, "Okay, we're gonna return to this topic".
Kara Wada, MD: Circle back.
If you can't connect the issues. Think connective tissues
Sarah Cohen Solomon, MD: Yeah, so it's tough because when, and I can't take credit for this excellent phrase, but Linda Bluestein uses the phrase "If you can't connect the issues. Think connective tissues". That's the beautiful line.
Kara Wada, MD: Oh, I love a good rhyme.
Sarah Cohen Solomon, MD: I'm so bad at making them up, but Linda Bluestein and Dr. Zingman are both really good at it, so I just use theirs. But yeah, so connective tissue is all over the body and we don't have a mutation that is known that gives us a reason for this happening.
What we see though is that it's all over it's not limited to just your vessels or just your, I don't know, uterus or whatever. It's. It's everywhere. So that's important to remember. Because again, going back to what we see in charts and we open up charts and say, oh man, look at all these problems.
No, the way the problem lists are written looks like a lot of problems, but it might genuinely be because of one thing that has many aspects. And that's a much better way of looking at it rather than, oh, I have eight diagnoses. No, you have one with eight components, but yeah, so I do make sure that I check on, everyone gets asked if they have headaches for one thing, so that I know to either go back to it or or address it directly.
But mast cells similarly, I'll ask about rashes. That's always in our, background, patient info and things like that. So we get through a lot of review of systems together. IBS as well. A lot of GI stuff going on. We have a lot of patients with various compression syndromes, so MALS for example which stands for Median Arcuate Ligament Syndrome and other syndromes, Nutcracker syndrome as well.
Things that can happen where if you're. Gut is essentially falling down or moving or shifting for whatever reason, weight loss or connective tissue disorders. What can happen is it can cut off either the nerves or the blood supply and cause tremendous pain in those areas. And that's underappreciated, I think, because it's poorly understood.
So we get through a lot. We get through a lot.
Kara Wada, MD: Yeah. That brings me back to a case that I just vaguely have little wisps of memories of back as a third year medical student on my pediatrics rotation with teenager with belly pain that had gone through the entire workup and then was concerned for one of those compression syndromes and sitting there wondering, okay, why did this happen?
And now, you see things, goodness, 15 years later could it have been, who knows? But that certainly would not have been on our differential 15 years ago.
Sarah Cohen Solomon, MD: No, of course not. And that's the beauty of it. Science keeps moving, so there's more that we know all the time and we do have a responsibility to keep up.
So I'm very blessed as well that a lot of these patients are at a nearby major children's center. So I know that they have access to specialists who I feel comfortable talking to and figuring things out together. And that's really important because I can't do all of it. I am not a neurosurgeon and should not be trusted with that scalpel. It's really important that there are other people to work together. None of us can do this all by ourselves. And that's what's wonderful as well, that PRISM is expanding.
That we have different viewpoints and people who come at it from different angles so we can do more and more. There are still patients who can't come to us and we still want everyone to get good care.
Kara Wada, MD: Absolutely, and I think you know what you're describing there, those phone calls between specialists, those are ways that block by block we can take down those silos that just naturally develop between different specialties and kind of different institutions and things that really, even though we are so connected through Zooms and virtual things and everything, and through the electronic medical record, it doesn't matter.
It really sometimes does take that extra effort and time that coming back to, that's really what I struggle with too, with my more medically complex patients and those who we believe are, have MCAs or similar things going on, it really does take so much time and effort to provide really quality care.
Sarah Cohen Solomon, MD: Yeah, it's so true. And I think there's something psychological about it too. When you pick up the phone and you talk with your colleague, that colleague is more likely to give you the credit of thinking it through as a team, as opposed to just looking at the notes and going, I don't know what this is about.
I'm gonna do my own thing. And when we work as thoughtful teams it's to the benefit of everyone. And I think, we're also used to our wind tunnels, and that's not the right word, wind tunnel, echo chamber.
Kara Wada, MD: Echo chamber.
Sarah Cohen Solomon, MD: Yeah, echo chamber. That's the one. Twitter and all sorts of social media just telling you what the algorithm knows you want to see.
We don't get exposed to other opinions and other positions and we lose the artistry of talking through, "Hey, I think this, but you think that how can we get to the bottom of what this patient needs? Because neither of us matter. It's not my opinion or your opinion, it's that the patient in front of us is suffering.
And if we can get together on the phone or on Zoom or whatever and have a conversation about it," I love those moments when I can make that happen. It's so special and the patient benefits so much that it's irreplaceable and that's what they need. And I think if we could do more of that, I think our patients would really, infinitely benefit from it by opening minds and being a team that way. So that would my wish.
Navigating the School System's Accommodation with EDs
Kara Wada, MD: Maybe we can switch gears a little bit and talk about the accommodations and like, I'm guessing that there are some challenges that can come about in navigating the school system with EDS.
Sarah Cohen Solomon, MD: Yeah. So let me first say that I love writing school letters and my patients always think I'm being sarcastic, but I love it.
I love it because it is super empowering to tell a young person that they are entitled, To having their needs met. Even so I have yet to meet a young person who wants that letter. So it's always a little bit of a battle of you'll really do better if you use this accommodation. But no 14 year old wants to be othered.
So it's always tricky. But it is to the benefit long term. So things that people don't think about when we talk about, a regular school building. And this applies for anybody with a mobility need. So my school building in high school, I remember had about 10 steps to get into the building, or you had to go all the way over there to get to the ramp and then all the way back with the ramp to get in with your peers.
Nobody took the ramp. Nobody took the elevator cuz the elevator was creepy. So even if you had a pass to use there was like peeling paint. It felt haunted, it was not good. Our building was genuinely designed by a company that designed prisons, so I.
Or so the rumor went, I'm not sure if that was true, but it always felt that way. And I bring that up specifically because I remember the feeling of crowds coming at me when I was turning a corner that I couldn't navigate them. Because if I'm stuck between two people, I could genuinely dislocate a shoulder which sounds absurd, but it's true. So navigating very crowded hallways is genuinely dangerous. Now, not everybody needs to avoid them just because they have the Ehlers-Danlos diagnosis, but it's still really useful for these patients to, for example, be permitted to leave class five minutes early or have a permanent late pass so that they're not rushing through and forced into those very difficult corners.
If you have stairs and I've heard very weird stories of buildings with like stairs to one area, but not another area, or rather a, like a ramped one area, but then. Another one was just forgotten. It's really strange what people come up with for buildings. And another one where the elevator pass was granted, but they had to find a teacher to ride the elevator with them, which very much defeats the purpose of accessibility because they had to find somebody and walk all those steps to do that. So that was not good.
But honestly I wish everyone who was in charge of these accommodations would take a day on just a pair of crutches. You don't have to make it all the way into wheel territory, but take a pair of crutches out because that's the easiest thing to understand quickly and get around one of these buildings during the time when people are crowding halls to be clear, and understand how scary and stressful and vulnerable it is to feel that way. Now, if you add onto it on top, people who also have dysautonomia those symptoms can really mimic anxiety.
And if you're stuck in an upright position where you can't breathe comfortably, you're triggering a fight or flight response, we're in trouble. So those are things that are just not on people's radar. So I have patients who, like the families will come in and say, really timid "Is it okay? Are you willing?" And I'm like, "Yes, absolutely". And they're really taken aback that I'm excited to write these accommodations. And it's so unfortunate that people have been met with so much pushback for things that they simply need to be normal and to be able to access the things that we're entitled to.
So that's a tough one. There are also things that people need for healthy test taking. I don't recommend that my patients write for an hour at a time or eight hours at a time without breaks. If you're gonna be taking the SAT. I don't know if they do paper anymore. I think they still do.
Those little circles are terrible for fingers. And the number two pencils, you can't grip those easily. So I want them to be able to use a grip for their pencils, or at least, have their own pencil. Or maybe we can get it on a computer screen if that's better for you as an individual, I want you to be able to stand up and stretch in the back of the classroom, or I want you in the front of the classroom so your visual disturbance isn't bothered.
Or I want you in a separate room altogether so that none of that is a problem. And you can have snacks that aren't gonna bother your neighbor. The sky is the limit in terms of what can help a person. And what my message is really about is that at the end of the day, the accommodations are so that you can make progress academically. We're not trying to do favors for these people. We're trying to say, you're entitled to show what you've learned.
And so I get really fussy about the pushback because at the end of the day, the exam is about "Did you learn the material?" It's not, "Do you know how to do bubbles?" I wanna see your academic progress. And there's so much emphasis on whether someone can achieve the way it's laid out in front of them, that it really takes away from what the real point of education is. And I think it's important to plug here as well, that. College admission tests and medical school admission tests were created to keep minorities out.
So I have a real problem with finding ways to make the test taking possible. And I'd really rather we, I'll just use the word dismantle, the system that is actually creating the barrier. Because again, we have to keep our eye on what the real goal is. The real issue. And the issue is I want my patients to thrive academically.
They can't do that if they're not healthy and they can't do that if they have barriers. That, we get the line like, oh, if "I did this for one person, I'd have to do it for everyone". And I say, "Okay, do it for everyone. That'd be great. Then I won't have to call you again". It's like, why are you making that an argument? That's absurd.
So that's my take on accommodations and as you can tell, I could talk for days on the importance of an appropriate accommodation. And what's really stinky is that at any point in the rest of these kids' lives, if they get an accommodation, in college or in graduate school, they're gonna be asked what they had previously, which is absurd.
We know that new things come up and I have in that corner back there a record going back to elementary school so that every time I need to take an exam, I have at the ready what my accommodations were going back to 13. And that's a huge burden on me as an individual. It's a lot of paperwork for some poor person to read in an office somewhere, just to go through.
And so I let my patients know to understand that cuz a lot of them have real drive and they want so badly to succeed and not be limited by the bodies that they were granted. That I just want them, or at least I want a parent to be paying attention to that so that there's some paperwork available if it ever is necessary in the future.
And nobody knows these things unless someone tells you. It's a lot of pieces.
Kara Wada, MD: That's huge. Because really education and opportunity opens so many doors for upward social mobility, economic mobility.
Sarah Cohen Solomon, MD: Yeah, it really can't be said enough. And a lot of our adult patients are on disability for a myriad of reasons, but largely because, we often wonder if what would've happened differently if they'd had better care earlier or been granted a certain accommodation so they could, use their, we know the word " spoons", use their spoons more wisely for them as an individual. Yeah. What could have happened? What opportunities could we have had? And I don't pretend to know the answers, but I still feel like it's something that should be explored.
Kara Wada, MD: Thank you for the work you're doing, for sharing all of this information and awareness, and I'm sure really opening so many people's eyes who have not even considered these possibilities.
Sarah Cohen Solomon, MD: Thanks. It's a real labor of love and I wish I had more time to go into each little detail to spread more awareness, but that would be a pretty heavy podcast. But yeah I do have new patient slots though, so I would love to see new patients.
Kara Wada, MD: Yes. And how can people connect with you or look at getting scheduled with you?
Connecting with Dr. Sarah and PRISM
Sarah Cohen Solomon, MD: Yeah anyone can go to the website, prismspineandjoint.com. There's a tab for patients. And you can sign up as a new patient.
I, myself see up to age 22 that's what I call pediatrics essentially through college, and for me I because the pediatric wing of things is new. I don't have a wait list, so I don't want people not to sign up because they think it'll be a long wait. And since we're actively hiring staff we're getting through the other wait list a lot faster than people expect, as well as so you know, so don't not sign up just because of the wait list.
I have amazing adult colleague counterparts as well, who, who would love to help you feel better. They're wonderful people. So if you go there, you can sign up. I'm on Twitter. I'm unfortunately beholden to the Twitter that I created as a third year medical student for my IM rotation because they gave us all of our alerts, like our announcements through Twitter.
So I will forever be @stcohen112 . That's my Twitter handle that I'm stuck with. But please definitely reach out. I love connecting with patients. I love spreading information through Twitter.
And yeah, I think social media remains a very important way to spread knowledge and connect about these things.
Kara Wada, MD: Absolutely, and we saw so much during the pandemic of how it really was in real time shedding a light on not only the severity of the disease, but also the long COVID.
Sarah Cohen Solomon, MD: Yeah. There's some really sad irony there of people who had dysautonomia before the pandemic and felt, again, it goes back to the gaslighting. Exactly. Exactly. And it's not that those with long covid are necessarily having a truly easier time, but it's so ironic to be relying on a group of people, the information that was obtained through that research that now this huge group of people is requiring as well.
It's so sad, it's so complex and so sad. And there's that little glimmer of hope that because of this there will be better research and better understanding and frankly, empathy in general for this tragedy. But we can only hope, right?
Kara Wada, MD: Yes, absolutely. Thank you. Thank you. Thank you so much, Dr. Sarah. I so appreciate you taking time out of your busy schedule and joining us today and just sharing all of this wealth of information and hope. And I hope we get to see each other at the conference this summer, if it all works out in real life, that would be great.
Sarah Cohen Solomon, MD: Yeah, me too. I look forward to it. Hopefully I can attend. But either way it's a wonderful conference, so I think it's a very valuable resource that we're talking about the Dysautonomia Conference.
Kara Wada, MD: Dysautonomia International hosts an awesome conference every July, so we'll be posting about it I'm sure in the coming weeks and months.
Sarah Cohen Solomon, MD: Yeah. Thank you so much. This was a real joy.
Kara Wada, MD: Me too. Thanks. Take care.
Sarah Cohen Solomon, MD: Bye.
Kara Wada, MD: Hey, everyone. I am going to ask you once again to go into Apple podcasts and submit a review of the podcast for me.
But first I'm going to share a review from Dr Lex RX.
"Dr Wada's unique perspective is amazing considering she's both an auto-immune patient and physician. Her experience, expertise and insight make this podcast so valuable. Keep them coming."
One other from Amanda Katherine.
"Wow. So informative. Thank you for bringing more attention to autoimmune diseases. Each podcast is so informative and well thought out. Very impressed with all that you do."
Thank you so much, Dr Lex Rx and Amanda Katherine. I really appreciate the feedback and the review.
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