From Diagnosis to Hope: Navigating Ehlers Danlos Syndrome

From Diagnosis to Hope: Navigating Ehlers Danlos Syndrome

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Hello. Welcome back to The More Than Teeth Podcast. I'm Dr. Michael Bennett, and I'm diving into a story that I think is very powerful and it's a wonderful collaboration that I've been able to be involved with with a wonderful person who's here today. Jessie is her name. Thank you, Jessie, for coming on.

Thanks for having me. I'm excited.

Thank you. And I'll let you tell your story, but let me just give it a little background. Jessie has a particular condition—she’ll tell you about it—called Ehlers-Danlos Syndrome. She's the expert in it because she lives in it every day, and I've been able to help her work through some symptoms and some challenges she's had in collaboration with other providers. Her journey is especially insightful, and I'm excited that she’s sharing it with you.

There is a balance with TMJ disorder and airway disorder, along with other things that contribute to Ehlers-Danlos Syndrome. And so if you're a dentist listening to this, I hope that you can think about your scope of practice—that it can include more than just teeth, more than just gums, and that you can literally help to change lives and improve lives by doing that.

So again, Jessie, thank you for being here. Let's talk.

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Jessie’s Diagnosis Journey

So can you just share what it is that you experienced? Start from the beginning and maybe tell people where you've been, how it's affected your quality of life, and the journey up to this point.

Okay. Yeah. So I didn't get my diagnosis till about two years ago when I was 30, but it's obviously something I lived with my whole life and I had no idea what was happening. I just thought it was rather normal for people to be in pain constantly and have to think about sensitivity to their skin or just all of the little random things that I had no idea were attached to Ehlers-Danlos.

And I have to note that you were actually one of the very first doctors to tell me, “You might wanna go get checked out for this because of how narrow my bite was.” That started my journey toward getting diagnosed. So thank you for being a part of that. I don’t know if I would've gotten a diagnosis without that.

EDS is systemic hypermobility. Most people tend to just think about the joints, and so they're like, “Oh, okay, just be careful and don't dislocate your joints and you'll be fine.” But there's so many other things that pertain to that. There's skin, there's poor wound healing, there’s gut issues like gastroparesis and poor absorption. There's brain fog, ADHD, and sleep apnea is a huge one because, as you pointed out to me, I have a very narrow bite.

My husband and I had commented on it before, but I had no idea it was a symptom. It’s funny—he would bite a piece of bread and have a big U shape, and I would bite it and it would be really narrow. I didn’t realize I didn’t have room for my tongue, that I wasn’t breathing at night, and that the constant fatigue I felt all the time was unnatural.

I just scratch my skin briefly and you can see the red marks it leaves. It affects everything. I have issues everywhere, and it was so hard. By the time I came to see you, I would wake up every morning and it would take me so long to get going. My head was super foggy, mostly with pain, and I couldn’t see straight. Just changing positions to get out of bed was so difficult.

I was nauseous because of the pain, also because of the gastroparesis. It affected the fact that I couldn’t get to work on time because I was too dizzy to drive. I didn’t trust my vision not to come and go while driving. Most days I couldn’t eat right away, so I was lagging from that. It just compounded my whole day.

It was awful. I couldn’t function, and by the end of the night, I was usually in tears because of the migraines I had. I’d have to take massive amounts of painkillers, use heating pads, and go to bed in tears. And that’s how my day ended, only to start the very next day the same way. It was a constant cycle.

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Living with Ehlers-Danlos Syndrome

You started at 30, you got your diagnosis at 31. Were you feeling symptoms before then? How young were you when you really started to be conscious of it?

Oh gosh, at least elementary school. I would get headaches and migraines in elementary school. I would wake up in the middle of the night and I could see the pain as light in my dream. It was so bright and blinding that I would wake up, realizing it was the pain, and I’d have to get up in the middle of the night, climb on the counter to reach the medicine cabinet, grab some Tylenol, and heat a sock in the microwave to use as a heating pad.

That was at midnight, while the rest of the house was asleep, and I would just be crying in my bed. I was little—I remember that. My parents took me to all sorts of doctors. I got checked for hypo and hyperglycemia, for Chiari malformation. So many doctors looked at me, and everyone said, “Oh, she’s fine.”

And I thought, how is this fine? How is it okay that I have to function like this? That’s when I began to think everyone felt that way. I thought I just needed to suck it up and be better.

I remember going to amusement parks—if I didn’t have a hat and sunglasses, I would end the night with a migraine, throwing up. And even as a child, skin sensitivity was awful. We’d play kickball at school, and I couldn’t understand how people could catch the ball because when it hit my skin, it burned so badly.

It wasn’t until I was 30 that I finally figured it out.

Wow. So you really have some empathy for people who may be experiencing this too.

Yeah. Absolutely. My mother lived in massive amounts of pain—I get it from her. And I lived in massive amounts of pain for years. I couldn’t walk because of my feet or because of my knees. My headaches were crippling. There were times I had ace bandages strapped to both knees, slowly waddling home. A ten-minute walk would take me forty minutes because I just couldn’t move.

It was so painful.

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Finding the Right Treatment

So tell us about this: you’re 31, you’ve got your diagnosis. Was that with Dr. Steven Berry?

Yes.

Okay.

I actually worked at a pain management clinic, and I came across his wife, who’s an expert in EDS. She and I got talking, and she said, “I think you might need to get checked out.” She essentially told me, “You have it. Please go to my husband and get an official diagnosis.”

She’s an RN, studies EDS, and travels around the world lecturing on it, so she’s quite an expert. That’s how he is so familiar with it—because he lives with it every day through her.

I went to him, and thankfully he didn’t ask me to do any of the party tricks, because those are quite damaging—like bending your thumb all the way down to your wrist. But yes, I went to him, and he was able to give me my diagnosis.

Wow. It makes me want to check my thumb. So it’s supposed to go all the way down to your wrist if you’re hypermobile? I won’t do it, but that’s amazing. Okay, so you went to him, you felt like you were on the right track, and he gave you some direction. Could you describe a little of what the treatment included when you went to him? By the way, he’s in Orem, Utah, right?

Yes.

Awesome.

The frustrating part is, not a lot is known about it. And because I have just regular hypermobile type—it’s not attached to any gene—it’s not as severe, but there’s less information about why I have it. So you basically have to treat the symptoms.

For me, the most empowering thing was the knowledge. Knowing that I couldn’t just push myself, and it wasn’t because I was weak or needed more muscle in my legs. It was because my hips and knees were dislocating, and I needed to sit down before I made it worse.

That knowledge was empowering. It gave me the opportunity to treat my body the way it needed to be treated, and to set boundaries I shouldn’t cross. That was hard, because society tells you to push harder, keep going, even when you’re tired. You can’t do that with EDS—it just makes it worse.

That was the biggest treatment, but I was also able to go to a podiatrist and get custom insoles. I had a neuroma in each foot that I got treated. I came to you, because when I told my regular dentist I had EDS, he said, “You need to go see Dr. Mike Bennett.” That was the start of my journey with you, which was incredible.

I was also able to get proper treatment for my neck so that my vertebrae weren’t shifting as much. It was about going to doctors who understood and who could say, “No, you shouldn’t do this—that will make it worse.”

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Collaboration and Team-Based Care

So really, that team formed around you as you went to different places—you got vertebrae support, the neuromas in your feet treated, airway support, and your joints decompressed and balanced. It’s interesting how that collaboration organically happened, even though none of us were really talking to each other.

No, it wasn’t until you came in and said, “Hey, I should talk to Dr. Steve Berry, and we should collaborate some more.”

That’s funny, because back in 2017, I had nose surgery to help open up my own airways. I had an overgrown turbinate bone that had its own sinus in it, and my septum was at a 45-degree angle. I went to Dr. Kurt Buss over here in Provo. And then when you came to me, I said, “If you need a good ENT, go to Kurt Buss.” But I had no idea you could also get allergy shots from him—that was something you should have been looking into.

Exactly. I was able to go back to him after talking with you and say, “Hey, this is something I need in order to get the MCAS—the Mast Cell Activation Syndrome—under control.”

So it was interesting: I had some of the pieces in place, but once I started talking to the doctors and looking for help, the team just formed. And the doctors were able to work together to give me the best care.

That’s awesome.

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Life After Diagnosis

Tell us now about your quality of life. Where are you at in your life right now? I know you’re a new mom—a seasoned veteran now. Your daughter is 18 months, right? She’s your first?

Yes.

So how’s life with EDS as a mom? How has it changed from the beginning as a new mom to now?

It is hard. I can’t pick her up as much as she wants me to. Instead, I have to sit on the floor with her because lifting her pulls on my shoulders too much. But it’s better than it used to be.

I remember in the first couple of years of my marriage, when we were thinking about kids, I couldn’t imagine it. My typical morning was terrible—I’d wake up, stagger while holding onto the wall, wait for the pain to settle enough so I could try to ignore it. There’s no way I could have taken care of Piper then.

She wakes me up now—I don’t wake up early before her. But I can get to her room quickly. Back then, it would have taken me 30 minutes just to walk across the hall, and I would have been afraid of dropping her from the pain. I could barely take care of myself.

Now, though, I get to stay home with her. I play with her every day. Some days are still hard, but it’s not the 8-out-of-10 pain every single day, ending the night in tears. Now, most mornings I wake up a little stiff, but I can get going. I can be with her. I can make her breakfast instead of sitting there like a zombie.

So you’re able to be the mom you want to be.

For the most part, yes.

And you like being a mom.

I do. Honestly, I was surprised. That sounds terrible, but I wasn’t sure I’d like it. But I love being a mom. It’s rewarding, and I’m so glad I got answers so I could have this life. It wasn’t even an option before.

Oh man, I don’t know if you can see it, but my eyes are clouded with tears. That makes me feel so blessed and happy for you—that you feel good enough to be a mom. And I can see your face light up when you talk about your daughter.

She’s pretty cool.

That’s wonderful. And it’s not just your daughter, right? It’s your relationships with family and friends—you can actually be present now.

Yes. My relationships with my dad, my in-laws, my brother, my husband, my friends—they’ve all improved. I can actually be there for them when they need me. Before, I was just sitting there, asking people to talk quieter. That wasn’t fair to them.

Now I can be more myself, more often.

That just fuels me. As a professional, hearing your story fills me with purpose. I know healing is never linear, but on the whole, you’re doing great things and living the life you want. That’s exciting.

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Insights for Healthcare Providers

I want to make some connections for the listeners. As a dentist, and with my research background, I think about this particular syndrome and how it affects the mouth. Ehlers-Danlos Syndrome is a collagen disorder, and collagen is in the gums, teeth, and supporting tissues. This means gum recession and periodontal disease can be more of an issue. Teeth are more sensitive. Structures are weaker. Jessie, have you experienced this yourself?

Yes. I could never bite ice cream or Popsicles. I’d just have to sit and lick a Popsicle, and it would take forever because my teeth would hurt so badly. Biting into an apple was painful. Even cold air hurt. And more recently, I started noticing gum recession.

That was scary because I want healthy teeth—they’re so vital. Now I brush with sensitivity toothpaste and pay more attention. I know my boundaries. I know where to seek help. It’s made a big difference. I’m not in pain every time I eat something cold anymore.

That makes so much sense. In dentistry, we often see patients with sensitive teeth. Before meeting you, I wouldn’t have thought to dig deeper. I would’ve suggested fluoride or desensitizing paste. But now, I realize I should ask about hypermobility, headaches, gastroparesis, or other systemic signs. That way, I can make the right referral and follow up.

That’s the hard part about EDS—it’s systemic. Doctors look at one part of the body, and if you only see that, it looks like something’s wrong everywhere. People thought I was a hypochondriac.

I remember when I held up a cotton stick between your teeth. It couldn’t fit because your upper arch was so narrow. That’s when I said, “This could be EDS—maybe you should look into it.”

Yes. And it all connected—the headaches, the neck and vertebrae, the shoulders, the back, the eyes, the ears. It impacted everything from the shoulders up, very acutely.

Exactly. And think about your feet. Neuromas made sense because the feet bear the body’s weight and have fewer collagen supports. Combine that with the fact that feet, hands, and face are the most nerve-dense parts of the body, and you’ve got chronic nerve irritation. That activates the central nervous system, triggers clenching and grinding, and even reduces saliva flow. That’s why dry mouth is also common. Jessie, did you notice dry mouth?

Absolutely. I’m pretty sure I also have Sjögren’s on top of everything else. Dry mouth is constant for me.

When I got pregnant, people said, “You’ll produce more saliva.” But I didn’t. For me, just having a hydrated mouth felt new—it was the first time I realized what “normal” felt like. Normally, I’m always dry. I drink water, but it just sits in my stomach, making me bloated and uncomfortable.

That’s fascinating. For providers listening—when you see a patient with dry mouth and sensitive teeth, think beyond fluoride. Look at systemic issues. Feet, neuromas, airway restrictions—it’s all connected. In Jessie’s case, we weren’t just treating symptoms. We were creating conditions where her body could heal.

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Treatment Approach and Healing Path

So for Jessie, our main objectives were clear: help her breathe well, support her airway, and decompress her joints. With a narrow upper jaw, a narrow maxilla, and limited space for the tongue, the airway collapses during sleep. Jessie is not overweight, but sleep apnea isn’t only about obesity—it’s often about small anatomical structures. One Stanford researcher said it best: “Small structures equal small airways.” And small airways create sleep apnea.

I had no idea that my narrow bite and lack of tongue space meant I wasn’t breathing at night. I just knew I was constantly fatigued.

Exactly. Without deep sleep—specifically delta wave sleep—the body doesn’t heal. Collagen can’t regenerate. Muscles don’t repair. And when the nervous system is constantly activated by pain, your body gets pulled out of those healing stages. That’s why our approach with you was to balance and decompress the jaw joints, relieve pressure on the collagen and bones, and support healing with oral devices.

Yes. I had to wear the daytime device for three months straight—all day, every day. And then I used a nighttime device as well. It wasn’t easy at first, but I could feel the changes.

And that was about six months in total, right? It’s a commitment, but balancing those joints, improving the airway, and creating stability gave your body the chance to heal. And at the same time, you were also working with orthotics for your feet.

Yes. Looking back, the combination made such a difference. Between your devices for my jaw and the orthotics for my feet, my body finally got a chance to rest.

And here’s what’s fascinating: when patients have neuromas in their feet, the pain stimulates the nervous system, which keeps saliva from flowing. So in Jessie’s case, supporting the feet also helped the mouth. Sometimes, we help the teeth by helping the feet. It’s all interconnected.

It really is. When one area improves, I notice other areas following.

And that’s the bigger picture. Our goal isn’t just symptom management—it’s to put the body on a healing path. Jessie, your strong constitution has carried you through years of pain. Now that you’re finally able to get restorative sleep and less nervous system activation, your body has been able to start repairing itself.

That’s true. I may not feel strong, but my body is healing in ways it never could before.

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Reflections on Risk and Reward

I think my biggest hesitation with the process was the fact that insurance doesn’t cover it. And that was frustrating because the condition affected my entire health. Insurance paid for other doctors who weren’t helping, but it didn’t cover the work we did together.

We were just out of college. We didn’t have much money, and I had to decide: do I take the risk and spend thousands of dollars on something I didn’t know would work? Or do I give up?

I was scared. I didn’t want to risk it, but I was desperate. Living in constant pain is unbearable. And honestly, it came down to two choices: give up or take a chance on treatment.

It absolutely worked. My life is completely different now. I can breathe, I can sleep, I’m not dislocating my jaw at night. I have more energy, I’m eating better, and I don’t crave sugar for quick dopamine hits anymore. The migraines and pain are no longer controlling my life.

That’s incredible. And let me ask you something fun—if I handed you $100,000 in cash right now, but it meant I had to take away your devices and give you all your pain back, would you do it?

Absolutely not. Not for $100,000. Not even for a million.

That says it all. Quality of life is priceless. Without it, money doesn’t mean anything.

Exactly. When I was in constant pain, I didn’t have a life. I was miserable. I even questioned why I was here. It wasn’t worth it. But now, my life is worth living.

And that touches me deeply. To know you’ve reclaimed your health, your role as a mom, and your relationships—it’s the greatest reward for me as a healthcare provider. More than doing a filling or scraping teeth, this is truly life-changing.

It is. I tell everyone I can about you. I say, “Go see Dr. Bennett—it will change your life.”

Thank you. That means the world to me. And for providers listening, Jessie’s story is a reminder that we can’t stay in narrow lanes. Dentists, doctors—we need to think bigger, look deeper, and collaborate. Because helping patients live a full, pain-free life is more than teeth.

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Conclusion and Final Thoughts

To every healthcare provider out there, Jessie’s story is a powerful reminder. We can’t just treat one tooth, one joint, or one symptom in isolation. Ehlers-Danlos Syndrome shows us how deeply interconnected the body is. When we step outside of narrow lanes and look at the bigger picture, we can transform lives.

For dentists, it’s more than teeth. Gum health, airway space, jaw alignment, joint balance, even foot support—all of these play a role in systemic health. Collaboration across specialties is not only valuable, it’s essential.

Jessie’s life today is proof. Where she once lived in constant pain, unable to function, now she wakes up each morning able to care for her daughter, nurture her family, and be present in her relationships. She is no longer defined by pain but empowered by choice.

And that is the ultimate reward as a provider—to see someone reclaim their life. It’s why I do what I do, and why I’ll continue to advocate for a broader vision of dentistry and healthcare.

Thank you, Jessie, for your honesty, your courage, and your willingness to share your story. Your journey will inspire countless others—patients and providers alike—to look deeper, think bigger, and believe in the possibility of healing.

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If you found this episode valuable, share it with a colleague or friend who wants to breathe better, sleep deeper, and live healthier. Your support helps us expand the conversation around airway-focused care and whole-body wellness.

Together, we can move dentistry beyond the chair.

Michael Bennett, DDS, PhD

Board-Certified Dentist | Healthcare Professions Educator

Empowering total health through airway-focused dentistry

Advanced Dental Care – Dr. Bennett’s clinical practice and patient-centered services

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