Dental Myths & EDS Truths with Dr. Audrey Kershaw

[00:55] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. I am so excited to chat with Dr. Audrey Kershaw again today. I've gotten so many questions from listeners like you who have EDS or HSD, and they have teeth and gum problems, and they wonder if they're connected or not. So this is going to be a very important conversation.
[01:24] Dr. Audrey Kershaw is the founder of Oral Surgery Scotland. Her career has taken her all over the UK, gaining experience at nationally recognized centers for oral and maxillofacial surgery before settling into an associate specialist post at Dundee Dental Hospital and School in 1998, where she practiced and taught until 2017. Through this, she has been involved in the education of well over 1,000 of Scotland's dentists. Audrey works with the Scottish Government's Focus Group on Rare Diseases and the Ehlers-Danlos Society. She has reached over 1,000 clinicians and healthcare professionals with her teaching sessions on hereditary disorders of connective tissue and EDS.
[02:04] I am super excited about this conversation and can't wait to get started. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.
[02:22] Okay, I am so excited to be back with Dr. Kershaw. We have had so many great conversations over email and things, but this is going to be the second time that we've gotten to chat this way. So thank you so much for coming back.

[02:34] Dr. Audrey Kershaw: Thank you for having me, Linda. Thank you.

[02:39] Dr. Linda Bluestein: One of the things that comes up so often, and I feel like a lot of people have questions about — especially as it pertains to hereditary disorders of connective tissue, EDS, HSD, et cetera — is wisdom teeth extraction. Are we extracting them appropriately? Are some people perhaps over-extracting? How do we know if wisdom teeth actually need to be removed? What can you tell us about wisdom teeth extraction?

[03:09] Dr. Audrey Kershaw: Yes, this is a question that comes up a lot, especially in chat groups when we have patients in and with parents. Wisdom teeth do not always need to be removed. Sometimes they'll come into position. Sometimes they won't come through at all. Sometimes they won't give any trouble.
[03:28] When I first qualified, Linda, in 1987, we were removing many, many more wisdom teeth than we were now. I'll just give you a little bit of a potted history of what it was. From '87 to 2000, we were quite happy here in Britain — we were removing whatever wisdom teeth we wanted. It seemed about right. We then got some nice guidelines out in the year 2000, and we were really only told we could remove wisdom teeth if they had given problems. This went on until about 2012. And we weren't really all that happy. I wasn't very happy as an oral surgeon, because I could see we were going to have issues.
[04:08] So in 2012, we had a paper come out by Tara Renton — who I've discussed with you before, a professor of oral surgery in London — and a colleague I qualified with, Louis McCardle. This paper was great because what it basically said was, after the guidelines came out, we were now removing more wisdom teeth than we were before the guidelines came out. They were trying to stop us removing so many, and what we were doing was removing wisdom teeth, on average about 7 or 8 years later, when we had decay in the tooth in front or gum disease. And so this wasn't very sensible. This paper opened up the whole debate, and we're now back to somewhere a little bit better after everybody has argued it out.
[04:57] We've now got new guidelines — the 2020 Royal College of Surgeons guidelines — that we're all maybe a little bit happier with. And that's what's happening in Britain. Over in the States, what we in Britain believe — and I've spoken to colleagues, and this is true — is that for many, many decades, everyone seemed to have their wisdom teeth out when they were in their late teens or early 20s before they went off to university. We now all seem to agree a little bit more. A lot of USA guidance has come out on it, and the Brits and the Americans are actually agreeing on the guidance, endorsing each other's guidelines. So we're getting a bit more aligned. They're trying to be a bit more sensible about this. But I feel in the States, it takes a long time to change how people work, and generally still more people are getting their wisdom teeth out younger than in Britain.
[06:04] So we have to think: what are the good reasons for taking out wisdom teeth? This is all in the 2020 Royal College of Surgeons guidance, which Tara Renton was part of. I've sent you the link to that, Linda, and you might be able to share that with the people listening. The indications are really obvious: if you've got decay in the tooth in front, if you've got decay of the wisdom tooth, if you've got a gum problem. We've now got medical issues in there as well — if you've got medical issues, say if you might be needing to go on a transplant list, or if you might be having chemotherapy for some blood cancer, it's sensible to get those teeth out.
[06:47] One interesting thing this Royal College of Surgeons guidance did say was, on average, 85% of the people with wisdom teeth do end up having them out eventually. We've got to remember that it's much easier — as the guidance says, which is all based in peer-reviewed publications — wisdom teeth are much easier to take out under the age of 25 because the bone is much softer. So we need to be sensible. We need to see each case on its own merits and decide from there. But it's definitely not the case that if you have wisdom teeth, you definitely have them out.
[07:27] I think anybody who's interested in it, go and read the Royal College of Surgeons guidance and also the American Public Health Association guidance and the other American guidance, which I've given you as well to put on your website. But we've got to have good reasons for taking them out, while also thinking forward to whether they might need them out in the future.

[07:52] Dr. Linda Bluestein: That's such great information. Not everyone has wisdom teeth, though?

[07:55] Dr. Audrey Kershaw: Not everybody has them. I'm not sure what the figures are at the moment. There is a place, I think in South America, where most of the population don't have them. So I'm not going to be going there as an oral surgeon to work. But most people, I think, in the States and in Britain do have them.

[08:17] Dr. Linda Bluestein: I know that you often first recognize connective tissue disorders when you are doing a consultation for somebody for wisdom teeth extraction. What are the things that you are seeing that make you suspect a connective tissue disorder?

[08:34] Dr. Audrey Kershaw: As we said in the previous podcast we did, Linda, I had my eyes open to this in about 2017. Until then, I didn't see Ehlers-Danlos, but now I see it in 1 in 8 of my patients, regardless of what they come to see me for — whether that's wisdom teeth, TMDs, or orofacial pain. I now have it so that my nurses, the managers, and reception staff quite often pick them up before I do. We can pick it up from a referral letter: the patient's anxious, local anesthetic hasn't worked — things along those lines.
[09:16] So when I go out to get my patient from the waiting room, they are looking anxious. We know what to do to get this patient less anxious. I now have a question in my medical history: "Does local anesthetic work for you?" I ask every single patient I see, and I ask them 3 times. And if they say, "Oh yes, it does," I say, "Well, does it really? Do you still feel any pain?" Because we really need to know. And that is a big indication that they could have a connective tissue disorder.
[09:48] I would quite often look down at them sitting in the chair, Linda, and I can actually see their fingers are very, very bendy because they're stressed and they're playing with their fingers. When we — if we've not picked the case up before we started, which would be rare — sometimes we discover it during taking the tooth out. The local anesthetic could fail then. Because more of our patients are younger and their teeth are better, so they haven't had fillings or any dental work done before. This might be the first time they're having to be numbed up. And so we find the local anesthetic's not working. Sometimes they can bleed a lot, sometimes they can bruise, but that would obviously be several days afterwards. As you know with any surgery, Linda, we also see poor wound healing and more infection in these cases.
[10:40] One thing that even my nurses can point out now is when I've got the patient numbed up and I'm making a cut with my scalpel, they will see that this tissue is behaving differently. And that's because we've seen so many of these cases. The tissue can be friable, it can be difficult to stitch it back over. It's difficult, but we can still absolutely do it. But it's nice to be able to recognize these cases and understand what's going on.
[11:06] And one thing I would say, Linda — it's really quite something — in the past 6 months, I've had people from Thailand, Italy, Spain, the States, Ireland, and Australia wanting to come to see me in Britain to have their wisdom teeth out. That is what the current state of affairs is like — these people find it very hard to find dentists who know about Ehlers-Danlos. And this is why we do these podcasts, to try and spread the word.

[11:46] Dr. Linda Bluestein: Right. That's so interesting. I actually had a listener — when I shared that I was going to be talking to you again — who asked a question about the whole issue of local anesthetic efficacy. She said that when she tried to talk to her oral surgeon about it, the oral surgeon said there are only two cases in which that can happen where you don't numb up. One is because you are misinterpreting a pressure sensation as pain — so you're still getting numb, but you're misinterpreting the sensation. And then the other had to do with a nerve abnormality, a nerve variant that somebody might have. So that's really interesting.

[12:25] Dr. Audrey Kershaw: Yes. Just before I came on the podcast today, I had a lady called Jenna from the States message me a lovely email just to say she's had one wisdom tooth out, she needs the others out, and she is struggling. The anesthetic doesn't work, sedation doesn't work, and she doesn't know what to do. So Jenna, I've got your email, I've replied, and I hope you manage to get the care that you need.
[12:52] One other thing I should probably say is, with wisdom teeth in younger people — and this is just what I personally have noted, we've not done a trial on it or anything — sometimes the bone seems to be so much denser.

[13:06] Dr. Linda Bluestein: Yeah, that's fascinating, because you wouldn't necessarily expect the bone to be denser like that. So that's a really interesting finding.

[13:14] Dr. Audrey Kershaw: Yes, it is. Hopefully my colleagues can all take this further in the years to come.

[13:20] Dr. Linda Bluestein: Okay. And what should patients with EDS do if they know that they're going to go for wisdom teeth extraction? What kind of things can they do to hopefully optimize the outcomes?

[13:32] Dr. Audrey Kershaw: We need to get the dentist reading up on everything they can about this. What I always say — and we've said in previous podcasts, Linda — is we need the patient to help as much as they can, because it's not the dentist's fault, it's not the doctor's fault that they don't know about this. If they send me an email, I will send them links to send to their dentist. They can get all the links off your podcast, Linda. But they need to help their dentist understand what EDS is like.
If they've got problems — and this happens a lot — the dentist can message me and I will speak to them. They can watch the podcast I did with you back in December of last year, which I think is a great one explaining the science and everything behind it. So they need to help their dentist learn about this. And there are people like myself, yourself, and others who will help them if they're needing help.
[14:32] I think it also helps if the patient has faith in the dentist who is doing it. I know in Scotland, in Britain, we are really spreading the word on EDS now through the talks myself and my colleagues have done. And more and more dentists are getting to know about this. But we're still not by any means finished the work we need to do.

[14:55] Dr. Linda Bluestein: For sure. And what do you do differently if you suspect that a person has craniocervical instability or CCI?

[15:06] Dr. Audrey Kershaw: I have never had a patient come to me and say they have CCI. I think in every EDS patient I would suspect it. And so I'm very, very gentle. In the notes I made talking to you about this today, Linda, I realized I put "gentle" three times. I can't overemphasize it — you've got to be gentle.
[15:30] When patients have wisdom teeth out, they can have it done under local anesthetic, they can have sedation, or they can go off to sleep. To me, the much more gentle way of having it done is to be numbed up, to still be with it, to know what's going on. Then they can protect their neck, they can get into the position I want them in. Really, I think it's actually easier for me as well, because I can talk to them, they can put their head where we need it, and they can do exactly as we want. There are peer-reviewed papers out that say the complication rate under general anesthetic — and I think sedation as well — is higher, because the patient cannot do what we want them to do. And that goes for nerve damage as well. So, have a good chat with your dentist.
[16:20] I know you had a podcast recently where you were saying, if you're going for dental work, put on a collar. That would be a great idea, as long as the dentist is able to work around the collar. When I take out wisdom teeth, Linda, patients are worried that they're not going to be able to open their mouth wide enough or get into the positions we want. What I always say to them is, I don't need them to do anything. What I need them to do is just let their mouth drop. And that is the best position for me. If I'm taking out a wisdom tooth, we take it out from the side — we're inside the mouth, but we're on the side. If they open really wide, the cheeks are in the way and we can't get into it. So the ones that really try hard for us, they're making it harder.
[17:03] And I have to say, "Thank you so much for trying hard — would you just let your jaw go to where it feels comfortable?" That makes it so much easier. I would very rarely have them with their heads in uncomfortable positions. Very, very rarely with a difficult tooth, but it's not that often.
[17:25] So I think we've just got to be so aware of the spine. And the other thing I would say about this is, Linda, Ehlers-Danlos syndromes are so underdiagnosed — I think we have to be assuming everybody could have these neck issues and just treat everybody as though they do.

[17:43] Dr. Linda Bluestein: Yeah, I agree. I know the guest who made that comment about wearing the collar — as an anesthesiologist who has spent over two decades in the OR, I'm thinking there are downsides to that, there are downsides to everybody suddenly showing up in a collar. And instead, I think that everyone who's managing an airway or doing surgeries — as you just said — we all need to be aware that there are way more people out there than we think who might have a connective tissue disorder and might have issues with neck stability. And therefore we should be, as you said, gentle, gentle, gentle.
[18:12] And if somebody can understand the concept that procedures — because of course there are many more besides wisdom teeth extraction — that can be done under local anesthesia instead of under general anesthesia, then you as the patient can let the surgeon know, "Hey, that position's not comfortable for me," and you can protect your joints so much better than if you have a general anesthetic. I think oftentimes people think the general anesthetic is safer. Of course, it depends on the surgery and there isn't always that option, but I'm really grateful for your explanation of that.

[18:54] Dr. Audrey Kershaw: Thank you, Linda.

[18:56] Dr. Linda Bluestein: So I want to move on to another topic, if that's okay with you.

Dr. Audrey Kershaw: Sure.

[18:59] Dr. Linda Bluestein: Okay. Oral appliances — do they help with TMD? What are your thoughts about that?

[19:08] Dr. Audrey Kershaw: Linda, we could talk for at least 3 hours on this. And I would suggest this would be a great future podcast if you ever have the time. Appliances help for some TMD. I would direct you to the Royal College of Surgeons Get It Right First Time TMD guidance on this. Professor Tara Renton from King's was one of the co-authors, along with Emma and Justin from the northeast of England. That is what we need to look at. It is an absolutely marvelous document — everything is researched to the hilt, peer-reviewed journals, comparisons — and it really just breaks everything down. I've sent you the link for that as well, Linda.

[20:01] Dr. Linda Bluestein: Yes, and I will have all of those in the show notes. Perfect.

[20:05] Dr. Audrey Kershaw: That'd be absolutely brilliant. So they will help for some patients, they won't help for others. They work in some clinicians' hands and they don't work in others. It's very much on a case-by-case basis. But for some Ehlers-Danlos patients, these definitely do help.

[20:19] Dr. Linda Bluestein: Okay. And then I think we definitely need to have a conversation that really focuses on those guidelines, which I think are really, really great. I've looked at them myself, because as you know, TMD is something that I have been struggling with for quite a while — doing pretty well nowadays, knock on wood. But we're going to talk about that in a future conversation. And I think we should also in a future conversation talk about oral appliances for obstructive sleep apnea and how those may or may not affect TMD as well, or temporomandibular dysfunction.

[20:56] Dr. Audrey Kershaw: Absolutely. And the only thing I can say to you about that is: Tara Renton. We need Tara. Tara is — sorry, Tara, you're one of my heroes, and I don't have many heroes in the world — Tara is absolutely brilliant.

[21:12] Dr. Linda Bluestein: Okay, we will definitely be having her on to cover that. Great. So let's talk about some must-do habits for oral health, because part of why I wanted to have this conversation with you is that there have been some more offhand comments made about dentistry and problems that people with EDS might face. And I feel like it's really important to understand that these things are very nuanced. There's that saying: if you've seen one EDS patient, you've seen one EDS patient. So, you're in there dealing with people's teeth all the time, and this is a population you are seeing a lot of because the word is getting out that this is what you do. So, can you give us some top habits for oral health, in particular for people with hereditary disorders of connective tissue, EDS, HSD, et cetera?

[22:07] Dr. Audrey Kershaw: I think, Linda, it's important to say that most of the oral and dental issues patients with EDS have are not specific to their EDS. The general population have these issues as well. And I can understand how people who have EDS think everything is related to the EDS — but most of it, with the dental and oral stuff, is not. So this is just good, general oral health advice that we are giving here.
[22:37] The important things we need to remember for oral health are diet, cleaning your teeth, and reducing sugar. We need to divide up what oral health is as well. Very briefly and simply: you can have decayed teeth, or you can have gum disease. That's it.
[22:59] So let's talk about gum health a little bit. For the general population — I'm not sure if you're aware — gum health has a really big bearing on the rest of your general health. There are multiple peer-reviewed papers saying that with diabetes, if you can sort your gum health, your periodontal health, you can reverse your diabetes. Now I know people are going to be listening and thinking, is she talking sense? We are absolutely talking sense — go and do a Google search on it. You can make your type 2 diabetes much, much better, and reverse it. You can come off a lot of your medication, if not all of it. And it also goes the other way around as well: if you get your diabetes under control, if you're more sensible with your diet, you can sort your gum disease. I think that's something a lot of people are not aware of, Linda, but it's a very, very important point.
Gum health is also tied in with things like heart disease, premature labor, and Alzheimer's disease. To me, when this all came out — I don't know, 5, 10, 15 years ago — these are massive, massive things. From spending 2 minutes night and morning cleaning your teeth, we can have such a big impact on the general health of the nation. Just very, very important.

[24:32] Dr. Linda Bluestein: Yeah, that sounds so important. And one thing I really wanted to ask you about — because I have this habit of sipping my coffee, and there is sugar in it because there's chocolate milk in there, I have to confess — how bad is that? Of course, you don't want to hear that you're doing something bad, but at the same time, if you are, it gives you something that you can change that will maybe make a big difference in your health. So what should I know about that?

[24:59] Dr. Audrey Kershaw: That's a really good point to bring up when I'm talking about reducing sugar. It's the number of times a day you have sugar that's important for having decayed teeth. So, the current advice is sugar no more than 4 times a day. That means if you have 1 sweet now and 1 sweet in 20 minutes, that would be counted as 2 sugar episodes. So try and have all your sugar at once.
We should also be reducing our sugar to the World Health Organization's recommendation, which I think for an adult is about 35 grams a day. What I always say to patients about this is, if you are looking after your general health, your dental health will naturally follow. Because if we're at no more than the World Health guidance on sugar a day, it would be very hard to exceed that.
[25:57] You were talking about your coffee with chocolate milk in it. That sounds a wonderful combination, but would you drink it through most of the morning — just a sip every now and again?

[26:08] Dr. Linda Bluestein: Yeah.

[26:09] Dr. Audrey Kershaw: We are very much on the same side as you, Linda — we're not meaning to give you a hard time or make you feel bad about this — but that is very, very damaging. If you're having a coffee with chocolate milk in it, you should maybe try and drink it over, I don't know, 4 or 5 minutes. Then that would be counted as one sugar attack, one acid attack. The way you're having it now, you're really going to be at big, big risk of a lot of decayed teeth. I don't know if you're happy for me to ask more — do you have much decay in your mouth?

[26:44] Dr. Linda Bluestein: Well, I am very paranoid about my teeth, which is ironic given that I've been having this habit. But I go to the dentist very regularly, and I always use the electric toothbrush, and I floss, and all of those things, and I've generally been doing okay. But at the same time, I actually have a magnifying mirror and I do my own scraping of my teeth when I see things on there. So I think that if I were to stop drinking my coffee in this way, I do see how that could very likely improve my oral health.

[27:18] Dr. Audrey Kershaw: Okay, so let me just say there — we're getting a few issues mixed up. You scraping your teeth, scaling your teeth yourself, that has got nothing to do with decayed teeth. The decayed teeth come from the sugar. The scraping your teeth is going to improve your gum health, but it's not really going to do anything about decayed teeth.

[27:40] Dr. Linda Bluestein: Oh.

[27:41] Dr. Audrey Kershaw: If you're having these 3- or 4-hour-long sugar attacks — we would call them acid attacks or sugar attacks — brushing your teeth has a limited impact on that. So what happens when you have a sugar attack is the bugs eat the sugar, they produce acid, and then the acid eats away little bits of your teeth. If you stop having the sugar, your saliva has time to get the minerals back into the teeth to re-heal them, and we can stop the damage.
[28:19] With you having sip after sip — I can see you've gone for water now, Linda, have you?

[28:25] Dr. Linda Bluestein: I'm feeling guilty enough that I switched to water.

[28:27] Dr. Audrey Kershaw: My goodness. We have got you completely changed. So we need to keep sugar to mealtimes and one other episode in the day. And if you're having sugar, try and have it all at once, but remember to try and keep within the 35 grams or less a day.
[28:51] What I find, Linda, is this is stuff we knew when I was a student 38 years ago, and we have still not got the message across to highly educated people. Where I live in Dundee, I have had to explain to every doctor, every educated scientist in our neighborhood who my children have been friends with — this is what I want my children to do when they come to your house, because this is what causes decay. And they are all amazed that it's the number of sugar attacks a day that matters. It doesn't matter if you're having 3 kilograms at once — that's going to do no more damage than 1 gram at once.
[29:31] You can tell I feel quite passionately about it. You know, we are spending all this money on mouthwash and toothpaste and special things to try to protect our teeth. If we could only get everybody to follow the rule of no more than 4 episodes of sugar a day, we'd be so much better off.

[29:50] Dr. Linda Bluestein: Okay. And I appreciate it because finding things that we can change and potentially improve our health — I worry about brain health. There's a history of Alzheimer's in my family, and I definitely want to do everything I can to help my own glucose tolerance and risk of heart disease and all those other things. So thank you, I really appreciate that. And what about bleeding gums? What should we know about that?

[30:16] Dr. Audrey Kershaw: Bleeding gums are a sign that your gums are not healthy. We quite often have patients — whether they've got Ehlers-Danlos syndrome or not — who complain their gums are bleeding, and they don't want to brush them because they're bleeding. Well, they're doing exactly the wrong thing. The gums are bleeding because the gums are not healthy. So we need to get them to ignore the bleeding and brush more, floss more, clean in between their teeth more.
[30:47] If they can do that with a dental professional's help, the bleeding will stop within 4 or 5 days. The bleeding is a really good early warning sign that there's something going on, and we need to be cleaning better. We need the dentist, hygienist, or therapist to be helping you learn how to clean better. A lot of people do not realize that. When they find an area bleeding, they think they're damaging it, and they stop brushing it. So it's very, very important to brush and clean between the teeth until there is no bleeding.

[31:26] Dr. Linda Bluestein: Yes. And do we need to worry about brushing too hard in those instances, or just in general?

[31:32] Dr. Audrey Kershaw: Yes, you can damage the teeth by brushing too hard. It would take months or years to cause damage, but yes, we can wear away the teeth by brushing too hard. That brings us to the conversation of whether we brush with a manual toothbrush or a powered toothbrush. The research would really say both are fine if you're using them properly. But for most people, we're maybe not using them properly, and to go for a powered one is much, much better.
Some of the up-to-date electric toothbrushes have a built-in sensor to tell you if you're brushing too hard, which is what you were just talking about. What I like about mine is it's got a timer — a 30-second timer in 4 segments — so you know when to move on to the next bit of your mouth, and you know when your 2 minutes is up. I don't know if I would know with a manual one when 2 minutes was up. So, any toothbrush is fine, but I would go for a powered one.
[32:45] Cleaning between your teeth — you can either use floss, or the little bottle brushes that go between your teeth, or I think you like your Waterpik, Linda. Whatever works for you. But do it, and find a way of doing it with your dental professional so that you're not getting any residual bleeding. Whatever way you want, do it — anything works.

[33:08] Dr. Linda Bluestein: Okay. And what about people with hypermobile EDS? Are they more prone to gum disease?

[33:16] Dr. Audrey Kershaw: The very simple answer to that one is no. And we've got a very good paper by our colleagues Ines and Ulrike in Europe, and I've given you a link to that. They are not any more likely to get periodontal disease, which is gum disease. And that is a big, big myth we've got to get rid of here. With most types of EDS, you do not get increased periodontal disease.
[33:55] I've sent you the very good link about just generally looking after your teeth with EDS. And there was also a colleague of mine, Mike Harrison, in London, and he has got a talk with EDS Support UK. I think it's about 90 minutes long — I can only give you a little snippet here. I would suggest you go to Mike's talk and have a really good look at that. He is a really calm, lovely man having a chat about it. A brilliant talk there as well. So go to Linda's site and get those links and listen to them — they're all very easy to listen to.

[34:39] Dr. Linda Bluestein: Yeah, and you gave us so many great links. Those will all be in the show notes so people can access all this wonderful additional information. So we're going to take a quick break, and when we come back, we are going to talk about toothpaste — is it damaging to teeth, or can it be? And other practical tips that people can use to improve their dental health. So we will be right back.

[36:26] Dr. Linda Bluestein: So we're back with Dr. Kershaw, and I'm so curious to ask you your thoughts on toothpaste and other products. You mentioned already about electric toothbrushes and interdental cleaning and things like that. But if you could give us a little bit more information on your best and favorite tools and products, or what kinds of things we should be avoiding, if any.

[36:55] Dr. Audrey Kershaw: Okay, so toothpaste. I have to thank a colleague of mine, Ray, for letting me chat about this yesterday and making sure I was up to date with all of it. So, toothpastes can be divided into a few different types. We have fluoride toothpastes; we have non-fluoride toothpastes for the people who prefer to avoid fluoride. In the past few years we've also had hydroxyapatite toothpastes come out. And then we've also had — which was mentioned in a previous podcast of yours — a chelating agent toothpaste. I think it was called Live Fresh. I don't want to be giving anybody free advertising, but I think that was mentioned previously.
[37:35] So, fluoride toothpaste has been around since about 1972 in the UK. The reason why teeth are better after the 1970s is because of the fluoride in the toothpaste. All through my career, I could tell by looking at somebody's X-ray or how many fillings somebody had whether they were before or after the fluoride coming into toothpaste. There is lots of evidence for it. There is very little evidence to say it causes any harm whatsoever when used in toothpaste.
[38:19] Your teeth are made of something called hydroxyapatite. When the bacteria eat away the tooth, the hydroxyl group is lost from this. So when you have the fluoride in your mouth, the fluoride in the toothpaste joins with the other groups and it makes fluorapatite. Now, this is actually what shark's teeth are made from, and it is much, much stronger than hydroxyapatite. That is why toothpaste is so important for strengthening your teeth.
[38:57] Another thing that having fluoride incorporated into your teeth does — just to take a little step back — is that your teeth will decay, they will dissolve with the acid, when they get to a pH of 5.5. If we have a lot of fluoride incorporated into your teeth, they will not decay until the acid level gets to pH 4.5. So there are big, big benefits in having fluoride in your teeth. Fluoride toothpaste: pretty good.
[39:31] As I said, there are newer toothpastes that have hydroxyapatite in them. These are good, but they do not give you the added benefit of requiring a lower pH before your teeth will begin to decay.

[39:49] Dr. Linda Bluestein: Mm-hmm.

[39:51] Dr. Audrey Kershaw: These are a bit newer. Yes, there are loads of studies on them. They're good, but we have to be aware of all the science in them.
[39:58] The other one that was mentioned on your podcast recently, Linda, was a toothpaste with a chelating agent in it. That chelating agent is called edetate. Now, this is used for heavy metal poisoning — if somebody is systemically affected by heavy metal poisoning, that's what it's used for. That toothpaste is very, very expensive. I think it's about £35 for a tube, rather than the 70 or 80 pence you might pay in a cheap supermarket here. But all that chelating agent does is take the plaque off the teeth and prevent new plaque forming — it won't do anything to put minerals back into the teeth. So we need either the fluoride or the hydroxyapatite to do that.
[40:55] I'm not an expert on that toothpaste, but it is very expensive. Some of the studies are looking good, and it will help your gum disease. But we have to remember there was a reason for fluoride being there. So we just need to keep a very open mind on a lot of this. For most of us dentists, we're still using fluoride toothpaste.

[41:22] Dr. Linda Bluestein: Okay. And is there such a thing as an abrasiveness scale for toothpaste? Are some more abrasive than others?

[41:23] Dr. Audrey Kershaw: Yes — and sorry, can I just add about the chelating agents? That was one toothpaste with that specific chelating agent. But in other toothpastes, we also have chelating agents, and some of those you'll see on your toothpaste label are things like citric acid, sodium citrate, EDTA, and other things like that. So we've got to think that these companies market things very, very well.
Yes, some toothpastes will be more abrasive than others. The whitening toothpastes in particular — there's so much going on there with so many chemicals. Some of these will abrade your teeth more than others, and so you have to be very, very careful. I think the best thing is to speak to your dentist about what you want to use, what you've been using, and get their take on it.
[42:27] Because the toothpaste along with the toothbrush — if we're really heavy-handed, yes, we will cause damage to our teeth. And another thing, just while we're on it: teeth were never meant to be white.

[42:42] Dr. Linda Bluestein: Yeah.

[42:43] Dr. Audrey Kershaw: But that's a whole other subject.

[42:43] Dr. Linda Bluestein: That's so funny, because my son was going to the store one time and I told him — because I have sensitive teeth — I wanted sensitive toothpaste but not whitening. And he said, "Mom, you want yellow teeth?" And I said, I just don't want the whitening in there because I have sensitive teeth already. And it was so hard for him to find a sensitive toothpaste without whitening — I know that there are ones out there, and of course he ultimately found it, but it is so hard nowadays to find a toothpaste that doesn't say whitening on the label because most of them do now.

[43:18] Dr. Audrey Kershaw: Right. Yes.

[43:20] Dr. Linda Bluestein: Is that something that's a good idea to avoid? I think your tip is excellent to talk to your own personal dentist, but just for the general person listening, what do you think about whitening versus not whitening?

[43:31] Dr. Audrey Kershaw: My personal take on it is to try and have everything in your life and diet as natural as possible — without colorings, preservatives, and additives. A lot of toothpastes have so much of this. Do we really need the red and blue stripes in our toothpaste? What are they doing?
[43:53] Another thing we have in toothpaste is something called sodium lauryl sulfate, which is a foaming agent. Now, that is a naturally occurring foaming agent, but it can cause a lot of issues — mouth issues, rashes, mucosal issues, a condition called lichen planus. So a lot of the time we say to patients, find a toothpaste without sodium lauryl sulfate in it.
[44:19] It's a bit of a minefield out there, but I personally prefer to keep everything as natural as possible. I use a toothpaste called Kingfisher — they don't pay me for the advert — but that has got only natural stuff in it. I go for the fluoride one as well.

[44:39] Dr. Linda Bluestein: Okay, that's great. That's very, very helpful information, because most of us are brushing our teeth multiple times a day, so we're exposing ourselves a lot to that toothpaste. Making a good choice there is probably very important.

[44:53] Dr. Audrey Kershaw: Could I also say something about toothbrushing? Very, very, very important. The last thing you do before you go to bed is brush your teeth. You should then not have a drink of water afterwards, and you should not rinse your mouth. In Britain, we have a thing called "spit, don't rinse." Do you rinse your mouth out after brushing your teeth, Linda?

[45:19] Dr. Linda Bluestein: I usually do, yeah.

[45:22] Dr. Audrey Kershaw: I'm so pleased we're talking. When you brush your teeth, you've got the fluoride going on them. You want the fluoride to stay there — so spit and don't rinse. You also want to go to bed. When you go to bed, your saliva rate drastically drops. Your saliva will wash away the fluoride toothpaste or whatever chelating agent you've got in your toothpaste, and it won't do as much good. So you want to brush your teeth, do nothing else, go to bed, reduce your saliva flow, and the toothpaste will be on there for as long as we can keep it — doing so much more good.

[46:06] Dr. Linda Bluestein: Okay, I love that. And so then if we're spitting but not rinsing, do we also have to be careful not to use too much toothpaste?

[46:14] Dr. Audrey Kershaw: Just use a pea-sized amount, whatever it says on the packet. When I started spitting and not rinsing, when my children were small and would ask, "Mom, what are you doing?" — what I find I have to do, Linda, and I don't know if this is going to help you in any way, is that I find it so hard to leave the sink. So what I do is I close my mouth, I put water over my face, and that sort of fools me into thinking I'm rinsing when I'm not.

[46:41] Dr. Linda Bluestein: Oh, okay. I love that. I love that the devils are in the details, you know? These are little things that we can do to make a big difference.

[46:51] Dr. Audrey Kershaw: They are just very, very basic dental things, but they are so important — utterly important for adults and for children.

[46:59] Dr. Linda Bluestein: Most of us don't have this kind of time with our dentist to discuss these things, so this is so helpful. If it's okay with you, I want to move on to the next topic.

Dr. Audrey Kershaw: Yes.

[47:06] Dr. Linda Bluestein: Okay. I want to talk about "dancing teeth." A past guest mentioned that people with EDS have dancing teeth, and I wanted to talk to you about what your thoughts are on this matter. Do people with EDS — and let's maybe stick to hypermobile EDS, because we know periodontal EDS is a different animal, and we'll talk about that a little bit later — do they have teeth that move more?

[47:32] Dr. Audrey Kershaw: So, we all know that with orthodontic treatment, teeth will move faster, and it will be sorer if you have your teeth straightened. So that is one thing. And I know our Austrian colleagues are doing a study on this at the moment. Or was it you — I think it was yourself that said your dentist was looking into this? Was that right?

[47:35] Dr. Linda Bluestein: My orofacial TMD doctor is studying this right now, yeah.

[48:07] Dr. Audrey Kershaw: Yes, that's great. So I think we've got to remember that the connective tissue in hypermobile Ehlers-Danlos will be different than in other people. I wonder if maybe the teeth might just be a little bit more — that nobody would even notice — but the same as people's joints, the connective tissue is different, so maybe the teeth would be different. I don't think this has any bearing on anything whatsoever, though.
[48:33] And I think if you did have gum disease, periodontal disease, yes, the teeth might be more prone to move. But not in any massive way — maybe just in a small way. If we can get the gums healthy, we're not going to have a problem. So that's my take on that.

[49:00] Dr. Linda Bluestein: And as far as you know, this isn't something that has been studied or published?

[49:04] Dr. Audrey Kershaw: I've not heard anything until you mentioned this to me, Linda.

[49:08] Dr. Linda Bluestein: Sure. And we know that lots of things are not published, and I love bringing guests on here to share their clinical experience as well as things that have been published. We don't all have time to publish things, and there are valuable anecdotes as well as double-blind randomized controlled trials. We just have to factor in what level of evidence various different things represent.

[49:32] Dr. Audrey Kershaw: Because I see only oral surgery patients and dental patients, I'm very aware of what I'm seeing in the mouths. It's not like the teeth are easier to come out in patients with hypermobile Ehlers-Danlos compared to the rest of the population. Sometimes I find teeth in patients with Ehlers-Danlos are much more difficult to come out. So that goes very much against the idea of dancing teeth. I wish some of these teeth would dance out.
[50:04] Last week on clinic — I'll change the guy's name — we had a young man, 25 years old. We'll call him Ozzy. Undiagnosed Ehlers-Danlos, I reckon — he's now going down the pathways to get diagnosed. But I see this in quite a few of our EDS cases: their teeth can be horrendously difficult to come out. And Ozzy, absolutely amazing. Very anxious, neurodivergent, but managed it so well. A lovely, lovely young man — sat there and let me get on with what I had to do. And I have the utmost admiration for these people. We quite often see this in EDS patients, Linda: they are very, very anxious, but they make the best patients ever, and I don't know how they do it.

[51:01] Dr. Linda Bluestein: Yeah, I've observed that too. I feel like people who have EDS and HSD, oftentimes they've had to deal with so much over their lifespan — even if they are young, like Ozzy. And so it seems like they are so much more resilient in some ways to these kinds of things, whereas people who have been healthy their whole life and then something happens often find it much harder to cope. Obviously I don't want anyone to have medical problems or oral problems at all, but that is an interesting observation.

[51:35] Dr. Audrey Kershaw: What I find about them is we need to work to get them on our side. And as I said in a previous podcast, this all starts with the dentist referring them in and saying, "Audrey's an okay oral surgeon, you go and see her." The reception staff are nice when they're getting the appointment booked. It's: "We know you're anxious, we're going to look after you. You come along and talk to us." We have so much work done before the patient even sees me, and then we continue with it. But we very much need to get them on side so they know we are all on the same side and we understand them. And I think that's one thing I've learned in learning about Ehlers-Danlos syndrome — there's a knack to managing this.

[52:13] Dr. Linda Bluestein: Yeah, definitely. Putting people at ease and letting them know that you understand the different needs of people with EDS, while also keeping in mind the general needs of their oral health. Because as you mentioned earlier — and I think it's such an important point — you could have two different things going on, but that doesn't mean they're correlated with each other. So it's always important to remember that. Could we talk about periodontal EDS? Is that okay?

[52:44] Dr. Audrey Kershaw: Absolutely. I think that's one the listeners will like to hear about.
[52:48] So, periodontal EDS is very, very different from any other type of EDS. It's caused by a genetic change in the C1R or C1S gene, and it presents very, very differently. I think when hEDS patients think they've got some gum problems, it's very easy to label that as periodontal EDS. But it's completely different. Our Austrian colleagues — I've sent you a link — have given us a really good YouTube video, and they've got papers out on it as well, and that's well worth a watch.
[53:28] Periodontal EDS is said to affect 1 in 1 million people. I have my eyes open to EDS. I know what EDS is about. I find rarer forms of EDS — vascular, classical, classical-like. I see different things. In the past 7 years, I have only seen one case that may be periodontal EDS. So it is very, very rare.
[53:57] This young man has gone for genetic testing, and we're waiting for that to come back. But when you know what periodontal EDS is — when I saw this man, it was like, why has this not been picked up before? Because when you know what you're looking for, it's obvious. When you don't know about it and don't know that it is a thing, it's very hard to pick up.
This was a 39-year-old man who actually looked about 25. A lot of issues — I won't say too much about him. Very bad gum disease. He had lived in Germany, had periodontal surgery there, was back over here, and was having similar problems. A couple of teeth were falling out. He came to see me about a wisdom tooth — wasn't coming to see me about Ehlers-Danlos — and I thought, my goodness, there's something going on here.
[54:52] So, let's just have a chat about the key signs and symptoms of periodontal EDS. That would be severe, early-onset gum issues. And a generalised lack of attached gingivae — that's quite a technical term. If you look in the mirror later on tonight, you will see that coming down from your teeth, your gums seem to be attached until maybe about a centimetre up, and then the gums are more movable. In periodontal EDS, they don't have any gums that are firmly attached at the top of the tooth to the bone. If anybody wants, they can Google this a bit more, but it's a very obvious look and it's very different.
They also have bruising on their shins — you'll know about all this, Linda. Easy bruising, hypermobile joints, sometimes blistering limited to their hands or their feet. Their skin can be more stretchy and their skin can be fragile. The EDS Society guidelines on how to identify a case say you have to have one major criterion — bad gum disease, loss of attached gingiva, pre-tibial plaques, or a family history — to be considered to have periodontal EDS. And then you have to have 2 of the minor criteria: things like easy bruising, hypermobile joints, increased rate of infections, hernias, and things like that. It's all in the links I'm sending.
[56:42] And then they would have to go off to be genetically tested. It's just very, very different.
[56:52] Ines and Ulrike, as I said, have a very good video. There are also some very good patient testimonials on the EDS Support UK site of people telling about their journey. The literature says normally people's teeth would fall out in their early teens or their early 20s. But I think from what I've read, because of better dental care, some of these patients are keeping their teeth longer. This man I saw was in his late 30s and still had a really good number of teeth. He still had pretty bad gum disease, but it's not the sort of textbook case of all teeth having been lost. Do you see many cases of periodontal EDS, Linda?

[57:40] Dr. Linda Bluestein: No, I don't think I've ever seen one, actually.

[57:43] Dr. Audrey Kershaw: That's good for the listeners to know.

[57:45] Dr. Linda Bluestein: Yeah, I've never sent someone for genetic testing because I suspected periodontal EDS. I have patients who do have gum disease, although I would say most of my patients do not. But that's not really my area of expertise and not the focus of my exam — I wouldn't necessarily know what I was looking for. But since we were just talking about regular gum disease, is there anything else you want to add about distinguishing periodontal EDS from regular gum disease?

[58:19] Dr. Audrey Kershaw: No, it is just much, much more severe at a younger age, and you don't have the gingiva joined onto the bone at the top of the tooth. I think Claire Francomano's paper on the red flags and reasons for genetic testing — that's a great paper on your website, Linda. Things like the pre-tibial plaques, the bruising on the shins that doesn't go away — that is quite a big giveaway sign. Although the case I found did not have the pre-tibial plaques.
[59:03] It helps when you've seen several of these things. You've not seen any, and I've seen a possible one, Linda. I don't think many people have seen many at all. So it's really quite difficult. But it's a very different disease.

[59:20] Dr. Linda Bluestein: Okay, very good. So, you know that we finish every episode with a hypermobility hack — or if you have even more than one hack, that would be great. What hacks do you have for us?

[59:32] Dr. Audrey Kershaw: I think it's sort of a bit of a summary, but I'm going to update my hacks a little from the conversations we've had.
[59:40] So, one of them is: spit, don't rinse.
[59:44] No more than 4 sugar episodes a day — and that includes hidden sugars.
[59:52] Dental issues are very common in the population, and Ehlers-Danlos patients have them as well. There might be slight complications with EDS, but we do not have to manage them differently most of the time.
And as we said in the last episode: work with your team, work with your dentist, be on the same side as them.
[1:00:16] Also, as I said last time — can we ask everybody to help us try to spread the word? Can you send your dentists to the podcasts we've done? People can just help spread the word, because the dentists are wanting to know, and therapists and hygienists as well. So just help us to spread the knowledge.
[1:00:36] And if your listeners have any questions, I'm opening myself up for a flood of emails here — they are very welcome to reach out.

[1:00:45] Dr. Linda Bluestein: Okay, wonderful. Well, I really appreciate that. And you might get flooded with emails — we'll see. Which, speaking of, where can people find you and learn more about your incredible work?

[1:00:56] Dr. Audrey Kershaw: Thank you. If they just do a Google search for Audrey Kershaw, it's amazing what comes up. You can see pictures of my dogs and everything. If they just Google me, they can find it. They can also find me at Oral Surgery Scotland — that's very easy to remember. My email address is there and they can go through our website. If you email [email protected], I'm going to get the email.

[1:01:34] Dr. Linda Bluestein: Oh, okay. Very good. Well, I'm so grateful to you for coming back on the podcast to share this really, really fabulous information. It is so interesting because I find this so often when I'm talking to experts like yourself — there are often some really nuanced things that we can possibly do that can make a big difference. And sometimes it's not the big surgeries or big interventions, but a lot of the small daily habits that we can change that can influence our health. So I'm so grateful to you for coming back on Bendy Bodies.

[1:02:16] Dr. Audrey Kershaw: Thank you very much, Linda. And thank you for asking all the questions you did to get the important bits out that I was forgetting to say. Thank you.

[1:03:27] Dr. Linda Bluestein: What a great conversation with Dr. Kershaw. And I'm fascinated, as you probably are as well, that there are some small things that we can do that can greatly improve our oral and dental health. So I want to thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD Podcast.
[1:03:44] You can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions. Did you know that I offer one-on-one support for both clients and healthcare professionals? Whether you're living with hypermobility or caring for people who are, I've got your back. Check out my coaching and mentorship options on the services page of my website at hypermobilitymd.com.
[1:04:10] You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn at Hypermobility MD. You can find Human Content — my producing team — at Human Content Pods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast.
[1:04:27] I'm so glad that you're enjoying the Bendy Bodies Podcast. We love bringing guests with unique perspectives to share. However, these unscripted discussions do not reflect the views or opinions held by me or the Bendy Bodies team. Although we may share healthcare perspectives on the podcast, no statements shared on Bendy Bodies should be considered medical advice. Please always consult a qualified healthcare professional for your own care.
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