The MEN1 Mosaic

#46 - Early Signs in the Mouth: Listen Up, MEN1 Parents (Dr Steffan Decker, Specialist Orthodontist)

• Lizzie Dunn • Season 1 • Episode 46

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What if the first signs of a child’s health issues weren’t in the blood—but in their breathing, jaw, or even sleep? I didn’t realise just how much oral health and orthodontics had clashed with my own MEN1 journey until I met Dr Steffan Decker. In this episode, he explains why mouth breathing, tongue position, and under-treated dental issues may be doing more than just affecting our smile—and why UK families might be missing crucial opportunities to intervene early.
 • Why mouth breathing matters far more than we’ve been told
 • How misdiagnosed orthodontic problems may mask deeper health issues
 • What MEN1 parents should know about sleep, growth, and jaw development
 • Why functional screening is worth doing—even if treatment comes later
 • How other cultures (and healthcare systems) approach this very differently

Dr Steffan Decker is a specialist orthodontist and airway-focused practitioner with clinics in London and Amersham. He combines orthodontics with cranial osteopathy, breathing therapy, and myofunctional approaches—treating patients not just for aesthetics, but for long-term stability and health.

Visit Dr Decker’s website here

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*Here I share my personal experience as a MEN1 patient. Nothing is intended to provide medical or holistic health advice. All opinions are personal, including those of my podcast guests. Always consultant a qualified medical professional.*

Hello and welcome back to a brand new episode of the MEN1 Mosaic Podcast. My guest today with me is Dr Steffan Decker, who is a specialist orthodontist and has come here to help share a lot about, um, what I didn't know before I met him, how much oral health and dental health can affect, um, our long-term health problems, whether we are MEN1 patients or not. And I know I have a lot of history, um, with my orthodontics and clashing with my MEN1 care. I've been so excited to bring him on and to share lots of nuggets of wisdom about how other patients may be able to help themselves a little sooner than I did. And if you're a parent listening in, how you might also be able to help your children navigate what is really quite a turbulent time for them and for you as well. So welcome Steffan, it's really exciting to have you on. Thank you so much for having me. And the first question I wanted to ask you is, it must seem very odd to a few people who maybe are listening to this that I've invited a specialist orthodontist to come and share on a podcast about an endocrine condition, but I'm sure that you might be able to tell us what are the links between, um, dental health, oral health, and the endocrine system? Well I think the main thing for us, it's the mouth breathing. Because I think the mouth breathing has a huge impact in our microbiome—so the bacteria that are sitting in our mouth—and that can change really quickly by us changing the way we're breathing. And obviously sometimes we breathe through the mouth because we have allergies, sometimes we breathe through the mouth because of the teeth, so there can be different reasons why. And when the oral microbiome is changing, we are ultimately changing the bacteria we swallow into our gut. And also that can change the vitamin D reception. So it can have a huge impact in actually the field you are talking about. But obviously I'm not an expert in that area. But for example, when it comes to decay, what we see in children is—there are children who have decay, they never ever touched sugar. So the perception is that a poor diet with a lot of sugar, carbohydrates causes decay, and sometimes that's not the case. So sometimes it's a vitamin D deficiency or mouth breathing or a combination of the two. So it's not as easy as one thing and it gives you the answer for everything. So I think we don't even actually know yet what the connections are between the fields. But I'm sure you can tell me more what you feel about it, because I'm actually very intrigued to know more about MEN1 syndrome—I had to read up about it, actually. So you can tell me maybe more about the links, what you feel is the link... Well my— I will explain actually my, um, my history with it. My orthodontics began when I was probably about 12 or 13, which I know is, um, I feel, quite normal in this country. I know that it happens a lot earlier elsewhere, sometimes later in other countries, but it’s around 12 or 13 for me. And that was exactly the same time as MEN1, which is, as I said, an endocrine condition, so affects the hormone-secreting glands in the body. It was exactly when that flared up. And at the time the plan was for an orthodontist—because I had a very complicated set of things going on. I had missing teeth, I had a very, very small mouth, not really enough space for my tongue. They wanted to try and sort out the missing teeth by putting things like gold chains in and encouraging the tooth to come down, they wanted to put braces in and all sorts. And as it clashed with when MEN1 flared up, and at that time I was needing regular monitoring, some hospital inpatient visits, things like MRI scans, and we were mistakenly told that I wasn’t allowed to have a gold chain at the same time as— and to go into an MRI scan. Which I believe is not true, may have been a mistaken piece of information. And I think my parents, bless them, who just wanted to deal with one thing at once said, you know what? The orthodontics are less important, let’s put that to the side. And unfortunately— I say unfortunately—fortunately my health was very well looked after, but my orthodontics just got left and left and left. I had a bit of cosmetic work done to make them look okay, and I never really thought about sorting my teeth out until about 10 years later when I was in my early twenties. And obviously, well, a little while later I came and saw you, and that’s when it looked like the problems that the NHS orthodontist saw when I was about 13 were only just surface level, and actually there was a lot else going on. And what is the reason for the syndrome— is it genetics? Yeah, so the syndrome is genetic. It’s a mutation on the MEN1 gene, which causes tiny little lesions, little tumours, to grow on certain glands. They overproduce hormone and they overproduce calcium, prolactin, lots of other hormones as well. And that then wreaks havoc with the rest of the endocrine system. So yes, it’s understood at the moment as a genetically inherited condition which causes endocrine overdrive basically. But that’s also interesting, because in my profession there are philosophies in the UK that a lot of the malocclusions we see are genetic. But then when you travel to other countries, they say exactly the opposite. They say a lot of malocclusion is epigenetic. So you know, I think that requires a bit more research as well. Genetic is something— oh, just accept it, don’t look any further. You know, a lot of people say that. Genetic impact—just don’t talk anymore, it’s genetic, deal with it. Yeah. But it’s the same with our area, in orthodontics. When you start actually asking why and you dig deeper, you get into an area which is not so easy to figure out, and then it becomes actually quite interesting. This is exactly what we’re talking about— like the breathing has a huge impact in our area. The way your tongue is positioning plays a huge role in our area. And most of the clinicians I deal with, they have no clue. They don’t connect. They focus on this tiny little area which is teeth and don’t actually ask themselves why. What could be the reason for them to be the way they are? And what could be the reason for the kids being tired? What could be the reason for them having so many tongue ties nowadays? So this asking for the why I think is a lot shut down by saying “It’s genetics. Don’t ask.” It’s a really interesting take you’ve got there. You’re not the first person—first podcast guest—to have said that to me, and it actually made me want to ask you: how much of our teeth can we put down to genetics? How much of our, you know, how good our teeth are— I mean, if I look at my parents, am I going to have good and bad teeth like them, or is it…? My personal opinion— I'm obviously very strong in that because I'm very deep into the topic— I think obviously we have a bit of a genetic given situation. But let’s go from the beginning: when we want to conceive a baby, mums—mothers—are being told: you need vitamins, don’t drink alcohol, don’t smoke. Why? It’s not good for the baby, because you’re conceiving a baby. But no mother is being told to check for sleep apnoea, to check for the oxygenation at night. None. So when we think about that—the brain is growing the most in utero and the first two years after birth—so if that brain that needs oxygen is deprived of oxygen, what’s going to happen? I don’t know. So, I think obviously in utero there’s not a lot we can do apart from improving our own health. But after birth, there’s a lot of external influences we can have an impact on—what we feed, how we breastfeed, when we change to solid diet, what kind of diet we give our children, what vitamins we give our children, what kind of food we’re eating when we’re breastfeeding the child. So there’s a lot more epigenetic influence. So my personal opinion is, I think maybe 10–20% is genetics, but most of it is epigenetics. And we can have an impact. On how big that impact is— that’s a big discussion we have. But I’ll tell you a funny story. Most of the kids we see— or I see—who have tongue tie and mouth breathing have a narrow palate because the tongue is not sitting there. So I had once this four-year-old kid, tongue tied, mouth breathing, mum was concerned, and I did a scan and I realised—there’s no crossbite. The palate is flat, very wide. So it was very confusing to me because it was the odd one out. So I said, “I don’t know why, but the palate is fine. I have never experienced this.” So I asked the mum, “What do you do? What’s your profession?” She said she’s an osteopath—craniosacral osteopath—and she was massaging the palate of her son since birth. Why? She knew that the tongue can’t go up and she knew there’s something wrong, and “I need to stimulate that structure because I’ve learned that in my education.” So every day, for 20 minutes, she massaged the palate. The palate was fine. So: external influences. And the same is happening when we have a dummy, a finger— we are doing this consistently, which has an impact ultimately on the structure of our face. So it’s a lot of… and there are also people, studies, where people got a stroke—one-sided stroke—which had a huge impact on the teeth. So there are also diseases where the lips pain resolved and cheeks—also the teeth flared out. So it’s very clear that the minute you change something in this, around the teeth, the teeth are going to change. So epigenetics, in my opinion, plays a much bigger role than most people in the UK will admit. And that is a problem. And that is the big fight I have. Because if you travel to South America, if you travel to Italy, they say “Yeah, you’re right.” If you’re in England, they say, “No, you’re wrong.” So it depends where you’re sitting, how they believe. So it’s a bit of both. But I would say—even if the UK believes 90% is genetics and 10% is epigenetics—there’s still these 10% we have to treat. Because if we’re missing the 10%, we’re missing a lot more. So they don’t deny there’s an epigenetic factor. They might just say it’s little. But even if it’s little—go for it. Try to change it. And even this little bit is not being done. This is what is not correct. I think you point out something really important, which is our absurd fixation on, you know, how much or little influence we have, is sort of a direct or indirect correlation with how much effort we want to put in. And actually, that little 10%, you know, it’s still huge in the grand scheme of things. And it might be bigger than that—it might be 20, it might be 50, it might be 90. Who really knows? But either way, does it matter? Would you not just go for it? I mean, I know I personally would. And not everybody would. And it made me want to ask you, you know, at a time—so, a parent, I’m not a parent—I can only imagine that parents have the hardest job in the world, and they want to bring their kids up and give their kids their best. And health is so important. For a patient with a child who has MEN1 and there’s so much going on medically, it can seem like teeth, orthodontics, dentistry is less of a priority. What can parents do to make sure that their kids are not missing out on something crucial that might be picked up by an orthodontist like yourself, that could actually have an influence on their health? I think—I agree—teeth are not a priority. But breathing is, yes. Because the first and last thing we’re going to do in our life is breathe. So—and if the child is not breathing correctly—that we should address. If it’s being done with the myofunctional therapy or orthodontics or a combination of—that’s a question that needs to be assessed. So what I would say: I understand that parents are overwhelmed with all the things they need to go to, but a screening of a kid—I think that’s very little time for the eventual benefits you get out of it. So I would say: screening, always. Whenever there’s a problem and we might want to rule out or verify whatever it is, screening is the first thing. If we then go for treatment or not, that’s a different story. And when we start with the treatment. But I’m a person, I would say, “Okay, I understand you have something going on right now. You can wait because the problem is not so big in my area. But at least you know.” And I think this knowing is better than going from one to the next and we still don’t know—which is a lot of parents too. They go from one clinician, professional, to the other and they don’t get the answers. They’re getting more confusion. And I think—so screening is super important. If you then do treatment or not, that’s a different story. I think it depends on the outcome of that screening. But breathing, I think, is super important. It’s not the teeth that are important—it’s just if we can breathe properly. You know, even if I say the mouth is fine—you have a septum deviation or polyps or whatever—that’s even a hint to go into the right direction. If it has a link to these conditions you’re mentioning, I don’t know. I think there’s too little research been done and it’s too vague. It’s like in my area—the direct link is very hard to connect. But breathing—good breathing—is certainly worthwhile too. And if you look at tribes who don’t have any external influences of diet, a lot of them are breathing through the nose. I’ve just come back from India, and I was in a very rural area of India—you know, they do yoga exercises every day in the morning. Every day. That is part of their life—praying, yoga. And what is yoga in their culture? It’s breathing and tongue exercises. I was gobsmacked seeing that. I said, “This is how easy life can be.” Ten minutes, fifteen minutes out of your day, every day, makes a difference. Alone saying—breathing. It’s just fascinating that in the culture we live in, we lost a lot of the basic skills. And one of them is breathing. It’s massively important, and I know myself because I’ve been on a little bit of a journey with my breathing. And yoga absolutely is one of my loves—one of the things that got me back into it. I wanted to mention a little trick which I picked up from a friend to do with nasal breathing versus mouth breathing. Now, I had no idea until she told me that I apparently let my mouth drop open and I breathe through my mouth during the day. I had no idea I was doing this. What is wrong with mouth breathing? Well, what’s wrong with mouth—let’s look at the animals. There’s no mammal out there who breathes through their mouth. And mouth breathing basically has a huge impact, because when the mouth is open, the jaw is growing in a different direction. It’s growing more backwards and down, which is more into our airway instead of away from our airway. So it’s not opening the airway. What it also does—when the tongue is low, it narrows the palate. And when the palate is narrow, it’s automatically also the bottom of your nose. So your nasal cavity is shrinking, getting smaller. Hence we get more resistance of air, hence we struggle more to get air through our nose, hence we go more to mouth breathing. So it’s a bit of a vicious circle. And also when we look at yoga techniques—breathing is the quickest way to control our nervous system. So when we want to calm ourselves down, we breathe through our nose. When we’re hyperventilating, we talk to a different nervous system. And that’s what we see in children—when we are mouth breathing, they are talking more with the fight and flight nervous system. So they are bed-wetting, they’re very unrested sleepers, they can’t concentrate well at school, they’re hyperactive. When we’re breathing correctly, we’re very calm, very relaxed. So mouth breathing has a huge impact—not only on the bacteria in the mouth and the gut and the oral microbiome—but on your behaviour. So the nervous system and the impact on your nervous system—and this is something we cannot underestimate. When we look at adults who do that for a long time, they’re deprived of good sleep because of the way they breathe. A lot of them have anxiety, they have depression. And this is something big. And looking at the statistics of ADHD in children—it’s going up, up, up every year. Is it all to do with whatever it is, environment? Or is it the way we breathe? I don’t know. But it’s just something I observe. And I see kids in the clinic. And the simple thing, as breathing through our nose, is being completely neglected. And that is a shame. Because I’ve just seen a different culture where it’s been done every day and it’s part of their life. So, mouth breathing—there are a lot of studies about it—that it is not good for us and we shouldn’t do it. The mouth is for eating and the nose is for breathing. That’s as simple as it is. And are there any things we can do to become more aware of whether we’re mouth breathing or nasal breathing—whether in the day, overnight—anything that’s kind of, you know, anyone can take away from this podcast and just apply at home? I think if you need water at night-time because you have a dry mouth, that’s a clear sign. Dry lips, you know. Then if you feel exhausted in the morning—snoring, of course, one of the classic things. If you have these tired eyes—we call it venous pooling—it’s a big sign for problems with breathing. But the main thing—what people say—they always need water, dry lips, they’re just exhausted when they wake up. Even if they had seven, eight hours sleep, they feel like, “I didn’t sleep at all.” So if you’re one of them, you should definitely look out. Also, if you don’t think about it, you just sit and relax and your mouth is always open—yeah, when you just observe at daytime—that’s a sign. But the most important thing is what we’re doing at night. So if you have young children, it’s worth a look at night when they are about one or two hours in bed—how do they sleep? And is their mouth open while they sleep? If they are, then it’s not normal. Then you should look out for that, yeah. And this is when you should have screening done. Because if they’re sleeping with an extended head and the mouth is open, they’re doing self-aid. So when we are doing first aid—which we all have to do—the first thing we learn, when someone is unconscious: overstretch, check for obstruction in their mouth, and overstretch the head and open the mouth. This is what children are doing at night. And adults. And they’re doing basically first aid on themselves. This is shocking. And we see a lot of them when they’re falling asleep in the backseat in the car, yeah. We see a lot of them in trains, in aeroplanes. You know. So when we are aware of these things, we see it much more. And there’s sometimes as simple as—we use mouth tape to mechanically shut the mouth, which can help us breathe through our nose. But obviously we have to be aware—a mouth tape is mechanically shutting your mouth. In an ideal world, we need good muscle strength to have that permanently done. So we need lips, tongue position—myofunctional therapy, basically—to train the structures so that our mouth stays shut without any mechanical help. This is the ideal world. And this is what we are trying to do here at the practice with all children—that at the end of treatment, not only the teeth are in a good position, the foundation is good, but also that their function, their breathing is there. This is very important. In adults it gets more complex, because they’re more set in their ways, and it’s just—to change structures—it’s much harder. It’s really fascinating because we haven’t yet—I mean, you’re an orthodontist and a lot of people might be thinking we’d be speaking about braces and all sorts of different types of treatments—I mean, we’ve not spoken about anything like that so far. It’s all been very basic—I say basic, it’s not basic in that sense—but, you know, it’s all the na—natural things, the way that the body is without all of the kind of extra stuff put on. And I guess many people will be thinking when they go to the dentist, it’s about fillings and, you know, this, that and the other. The orthodontist—it might be about braces or Invisalign or that kind of thing. You know, is that more aesthetic rather than functional? Or does that all provide a kind of, you know, a multi-role, as it were? Yeah, you hit the nail on the head. Most people, they look for cosmetics—you know, aligned teeth. But if you don’t treat the underlying issue, this beauty will not last very long. And for me, the tool I use to get my result—it actually doesn’t matter. Give me any tool. Like, for example, if you have a sticking-out tooth, we can use a brace, we can use aligners, we can use whatever we want. Or we can use a finger—put the finger in there, 24 hours, the tooth is perfect. But even if you just close your lips, the tooth will go back. So the tools are actually not important. If you don’t understand the why, you can be the best orthodontist in aligning the teeth and have a cosmetic outcome—but it will not last. So what’s the point of doing it? And so that’s where people then say, “You need lifelong retention. You need something to stabilise your result your whole life.” How realistic is that? You give a teenager the task, “You wear a device every day of your future life.” It’s not going to happen. So what happens? They don’t have a retainer—at one point, they get a relapse because the tongue is still thrusting. So what I try to—the philosophy I have is—they need to understand that the impact we can have in the structure around the teeth—the teeth will respond. And yes, we need to move them eventually, but I can teach someone how to move the teeth, but I need to tell them the philosophy first. And that is, for me, very, very important. Because if you don’t get it, you—on day one, it looks great. Look at it 10, 20 years later—it might not look so great. You might be lucky in a few cases—10, 20, 30%. And that’s what they show then on big conferences. But on a long scale, we want to do the right thing. And the right thing is: you have nice teeth in a stable position, and people breathing through their nose. That’s what we want. You go all over the world to talk and lecture and teach, and you’ve also trained elsewhere, worked elsewhere. The audience for this podcast is not exclusively, but mainly UK-based. Can you give us a bit of an idea of why orthodontics look the way they do over here? Which is—I mean, in my experience anyway—I didn’t even think about braces until I was in my teens, versus some countries where they start a lot earlier, versus some countries where they’re just not even a thing at all. It might help patients understand maybe why they’ve got to where they have now and they might never have seen an orthodontist in their life. I think, look—it is very clear that education, the university education in this country, is very different to the university education I received in Germany. Like in Germany, we were only trained on children. That was our training. Our patients we’d seen in our training programme were children—maybe 2 to 3, 4% were adults. Here, it’s completely the opposite. So they don’t have a lot of knowledge in how to treat growing individuals. And then there are some opinion leaders who don’t believe in it. But where I come from, all the inventors of these devices in the world—they were German, Austrian—because they believed in it. So I was fortunate enough—from the first day, actually, of my training—we had an osteopath coming into the clinic, and every bite change we did on children was approved by the osteopath. And I said, “Why is an osteopath coming to our clinic?” “Because they need to check how the body responds to the teeth we’re changing.” I said, “This is bizarre. That has nothing to do with—” He said, “Yes,” and she showed me how the legs are responding to different bites. And I was—“What is this?” So this was from the first day in my education. I had the luxury to understand this area has a huge impact on the body. And now, obviously, I know so much more. But I have to thank my first trainer—she was a lovely lady—and she gave—she flew me all over the world to get training. And unfortunately, I have to say that mindset is not common. So in the UK, we don’t have the best training. So sometimes, you need to travel to other education systems to maybe get a different approach to the same problem. I think it’s super important that we are open-minded to different philosophies. Because in South America, they train very differently. And they treat very differently than we are trained and treated here. So travelling is important—to see, to be open. And that’s why we travel for private reasons as well—to see different cultures, what they eat, what their belief system is. And not everything is bad when we travel. You know, they have a reason why in Hinduism they believe in a thousand gods—and they’re very peaceful. So is it a bad thing? No, it’s just different. And you get a lot of love for that. So it’s the same in orthodontics. When you never leave the country, and you only think of the education you get in this country, you’re very limited in your mindset. And it’s not their fault, because that’s what they hear all day, every day. But you step out of your comfort zone—maybe a bit—and you might hear different things. And then you might get confronted with a mirror who tells you, “Hmm, maybe what you currently do is not the only approach.” And then you have to make the choice. Do I accept that someone tells me I’m not doing the right thing? Or I might have to change the way I do things, and be open for it, and learn, and be eager to learn? Or do I say, “No, everyone else is wrong. I continue the way I do it.” I’ve heard it all. I had clinicians telling me, “No, I did orthodontics with the extractions the last 40 years. I will continue doing it the last 10 years of my life.” And I had orthodontists who joined my training programme and said, “Wow. You are changing my life.” So change is not easy. It’s uncomfortable—stepping out of comfort zone. Some people are good with it, and some are not so good with it. But the people who don’t receive the education—they’re not to blame that they don’t know. They just don’t know. They don’t see it. And if you don’t see, you can’t treat, you know. So I’ve heard it all. And that’s a common problem that patients tell me—they’ve seen different clinicians and they just didn’t pick it up because they didn’t know. If you don’t know, how can you treat? So education is very important. It certainly is. And it leaves me with one final question I want to ask you, which is: if there’s one—one—piece of wisdom that you could send any listener away with today, what’s one thing that you would like people to take from your podcast? Whether it’s something about breathing, something about, yeah, checking for signs—just anything that you think would be valuable. Number one is—respect each other. And just because someone has a different opinion doesn’t make him a bad person. And be open to listen to opinions. And especially in this world of “airway” or “not airway”—they’re two different worlds, and they seem to attack each other, which doesn’t bring anyone any further. It just creates a lot of friction, negative energy. We don’t need to waste our energy on this. If a mum is there and her gut feeling tells her there’s a problem with her child—generally, she’s right. Because a mum is right with the gut feeling about their children. If you don’t get the answers for that problem you feel, maybe you should seek someone who might listen to you—take the time to listen to you, and maybe give you the answers you are thinking of. So I think gut feeling is good. And if you have the signs we talked about, then it’s worthwhile screening. Screening is very important. If you don’t find a dentist who can do it, maybe change dentist—or advise the dentist to listen to all the information that is out there—from yourself, from my social media. There’s information they can get. And they might be a bit resistant at the beginning—but eventually… What is really interesting to me, last few years I get more and more kids of actually dentists coming to me. So they were very much against it at the beginning. Then they hear the things I’m talking about and they suddenly say, “Hold on a minute. My princess, my prince at home do exactly what he’s talking about.” And I just had yesterday a very influential dentist with his young daughter coming to me for advice—and he really appreciated it. And it’s changing slowly. Because when it comes to your own family, your own children—you don’t think with your head, you think with your heart. And this is exactly what I talk about. Someone might have a different opinion—sometimes think less with your head, and follow your heart. Your gut. So this is, I think, a very important message I would have to anyone out there: be nice to each other, and respect each other. And one opinion doesn’t mean there are not other opinions. I love that. And thank you so much, Stefan, for everything you brought to today’s episode. I know I’ve learned a lot—and I’ve met you before, I’ve been following your social media for a long time—so I think anyone who might have just found you is certainly going to have had a whole world opened up in front of them. And you’ve helped shine a light on something which really is not discussed at the moment, for this patient community anyway. So yes, I thank you very much for your time, and look forward to maybe having you back on again in the future. Thank you so much for having me. And if you want to follow my Instagram, I’m @theorthodonticspecialist—would be nice to get a follow from you with all the education on it. And speak to you soon. Thank you so much for the time. Bye.