Mast Cells to Microplastics with Dr. Anne Maitland and cohost Dr. Dacre Knight

[01:07] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained physician dedicated to helping you navigate Ehlers-Danlos syndromes and complex chronic illness. Today I'm joined by Dr. Dacre Knight, who is not only an expert in EDS, HSD, POTS, and mast cell disorders, but is also joining me as a recurring co-host. Dr. Knight is the medical director of the UVA Health Hypermobility Disorder Center, which is officially partnering with Bendy Bodies. Today, we're going to be talking with Dr. Anne Maitland. I'm so excited to chat with her. As someone who has had lifelong allergies and mast cell-related symptoms, I am always intrigued to learn what the latest information is in this very, very important allergy and immunology space.
[01:50] Dr. Maitland is the medical director of the MUSC Ehlers-Danlos Center and an associate professor of medicine in the Division of Rheumatology at MUSC. She is a nationally recognized expert in allergy and immunology with a focus on improving access to care and advancing the diagnosis and treatment of immune-mediated conditions, including mast cell activation disease. Dr. Maitland collaborates on innovative multidisciplinary care models for complex disorders like Ehlers-Danlos syndromes. She serves on national committees and scientific faculties dedicated to mast cell disease, health equity, and integrative medicine, and is a fellow of both the American College and the American Academy of Allergy, Asthma, and Immunology.
[02:30] 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.
[02:43] Well, I'm so excited to be with Dr. Maitland here today, and of course again with Dr. Knight. Dr. Maitland, thank you so much for joining us.

[02:51] Dr. Anne Maitland: My pleasure. It's been a minute since we last chatted.

[02:54] Dr. Linda Bluestein: Yes, it has been a lot more than a minute, and I feel like so many things have changed in this space. It's funny because I know sometimes people get frustrated, and very understandably so. It feels like things are just moving slowly and we're not making enough progress, but we really have learned a lot of new things. You've been doing some fascinating research, and I would love to dig in, in particular to this new paper that you published that looks at allergic disorders through the lens of epithelial barrier dysfunction. Can you tell us basically what that means and why you think this is the right time to have this conversation?

[03:34] Dr. Anne Maitland: Within the past 50 years, we've seen a huge shift in the burden of disease. Since the 1960s, we started seeing the rise of both immediate disorders such as food allergies, rhinitis, asthma, and also some neuropsychiatric and neurodevelopmental disorders as well, along with delayed hypersensitivity disorders like myasthenia gravis, multiple sclerosis, and Crohn's disease.
[04:05] There's been various theories put forward to try to explain the rise of these hypersensitivity disorders. There was the hygiene hypothesis, but that wouldn't explain individuals that live in communities that are not necessarily considered high net worth that have the ability to maintain huge hygiene issues where all those disorders are now at epidemic levels. And so we wanted to understand why you would see such a dramatic change in disease. Like, 1 out of 2 individuals are now being treated for an immune-mediated disorder. I find it hilarious that when we watch the Super Bowl, half of the commercials are some medication to suppress some aspect of our immune system to control some chronic disorder.
[04:52] And so the best set of ideas that brought it together was the fact that we have so changed our environment that the genes we've inherited to detect and respond to classic dangers — when our ancestors weren't living with filtered water and food supplies that are supposedly protected — have been completely confused. You know, we were using pine, then Pine-Sol, and now we're using all these types of cleaners. The fact that our food supplies have been completely changed. I find it interesting that when we go to Europe, their refrigerators are like a third of the size because they buy everything fresh, not shipped from Colombia on a boat and hopefully landing on your local market, or — welcome to New York — you buy it from a vendor on the street. Our food supplies have completely changed, the air quality, and the time we spend indoors versus outdoors — all of these are insults to the borders that separate us from our outside environments.
[06:02] So you're talking about the skin and the linings of all the internal organs, whether you're talking the respiratory tract, the gastrointestinal tract, or the urogenital tract. They're under assault. We live in a very toxic environment that just happened within 30 years. And I think the children were the first to manifest, but us more seasoned individuals have caught up. Now we're seeing that when individuals have chronic upper airway conditions or food intolerances, or they can't even tolerate going into Bed Bath & Beyond — not to besmirch one of the national organizations, but when people are spraying things into the air — the first thing people will do is go to an allergist, and the allergist will skin test, essentially looking for an antibody that sits on mast cells. And within the past 10 to 15 years, there's a growing number of us who would say patients are reacting and allergy testing is completely negative. So clearly, there must be something with the borders and how the borders recognize danger, and then how they respond to danger.
[07:20] If you watch any animal kingdom show, you have to be able to detect danger in order to not be eaten — or, if you're bitten by some Jumanji creature, you're not going to be taken out by a toxin. And so what we have inherited from our ancestors, which served them well in that environment, has been completely confused by industrialization. The best theory that's been put forth is the epithelial border or barrier hypothesis, saying that there are things in the environment — chemical triggers, infectious triggers, and also physical triggers — that act as injury to the borders. And those borders are not just some passive gate keeping us apart from our environment. They have the ability to detect danger and call in help.
[08:15] The first line of defense isn't the mast cells. It's actually the somatosensory nerves. The Nobel Prize that was awarded to Dr. David Julius and Ardem Patapoutian — I always mispronounce his name, so I apologize — showed that the somatosensory nerves actually have receptors that can detect toxins and dust mites, and that can actually sensitize the skin or the respiratory tract to recognize those as a danger. And now the mast cells will be called in because the alarm has been set off.
[08:58] I started to appreciate individuals that were reacting but whose allergy testing was completely negative dating back to the early 2000s. And it really wasn't given a name until 2010, 2011, when it was given the name mast cell activation syndrome. These are cells that have been found in sea squirts, to birds, to reptiles, to humans. And guess what they sit next to? They sit right next to the nerves, in between the blood vessels and the epithelial barrier. So you have this triad whose job is to detect danger, sound the alarm, and call in appropriate help.
[09:44] The help that gets called in is the mast cells, because they have a lot of potent chemicals — which is great if you got bitten by some snake or spider, or you have some physical injury. They have a host of chemicals that you want out there to contain that danger and then clean up after the danger is contained. But these poor cells that have been profiled as bad characters that should have been eliminated — well, last time I checked, there's not a single human alive that lacks mast cells. It's unfortunate that we treat the cells we've inherited as one-trick ponies. It is an interaction with all those cell systems, which are represented in every organ system of the body. You have the connective tissue, you have somatosensory nerves, and you have the elements of the immune system with the mast cells as the resident defense.
[10:48] If you get an exposure that your body thinks is dangerous, it will respond. And the biggest burden of disease outside of industrialized nations is parasites. So the default pathway when you don't detect a bacteria or a virus has been co-opted from the defense against parasites to responding to triggers like forever chemicals, microplastics — the fact that the average American spends like 90% of their time inside of something manufactured. How we live, what we drink, what we wear, how we sleep, how we spend our time has been completely changed in less than 30 years. And that has completely confused defenses that have been operating in our ancestors for millennia upon millennia.
[11:53] The timing of it is that we started seeing a huge rise after the AIDS epidemic came under control — food allergies, rhinitis, asthma, eczema, irritable bowel syndrome, which is basically the gastroenterologist not seeing any inflammation. They don't see any inflammation because it's all happening in the borders. And until we get better testing, I think we need to lend a hand to elaborating this triad of the epithelial border, the nervous system, and the immune system, with mast cells being front and center. They talk to each other all the time. If the danger signals aren't there, the body can stand down, and so you're less susceptible to reacting to harmless substances. But if that danger signal is always there — think about a police officer who has been in a firefight after firefight after firefight. And then he hears a little sound. What do you think they're going to do? They're going to shoot first and ask questions later.
[13:09] So what we have seen is this raising of the alarm, which then increases the susceptibility for mast cells to be recruited for allergic and a host of non-allergic triggers that causes this chronic, subacute compromise of the border. That border allows stuff to get in that shouldn't be there, now interacting with the nerves and the mast cells. So you have this — for lack of a better word — chronic leakage of the skin, of the respiratory tract, and the gut. And as that stuff gets in, the system responds: danger, respond, and sort it out later. Which makes sense when we were living in small villages.
And to pivot to why I think individuals who have hypermobility face almost a two-edged sword — if you ask individuals who are hypermobile, how's your sense of smell? How's your sense of taste? How's your sense of hearing? They're the ones who can smell gas like a mile away, which serves you well in a village. You hear something. You're going to be the early warning signal: "Something's coming. Pay attention. Look around." But I think we are so overstimulated with physical stuff, chemical stuff, and sound that the alarm never stands down. And that has led to the co-opting of a defense that was really important when we weren't so surrounded by so many industrialized aspects of our daily living.
[14:50] So that's a long explanation to say that how we try to deal with our environment on a moment-to-moment basis, when the environment was completely changed in 30 years, has led to a rise in hypersensitivity disorders. And that includes the release of chemicals from mast cells that have the ability to modify the integrity of the connective tissue.

[15:22] Dr. Linda Bluestein: Thank you so much for that excellent explanation. That makes a lot of sense to me. I have to add a little story here about when I was probably around 8 years old — which is kind of funny because that was before I knew I wanted to be a doctor — but I told my mother, and I know this kept getting repeated back to me, that my mom and I would never get some big cancer that we didn't know about for years and years. Because I knew even from that young age that I was very aware of what was going on in my body. And I knew that my mom and I were alike and my dad was different. So it's kind of funny that you're saying we're the canaries in the coal mine, right? I've known that since I was a child.
[16:02] So when it comes to connective tissue disorders like hypermobile EDS and HSD, are you saying — through this hypothesis — that there's a certain proportion of this population that has these conditions as completely inherited properties, versus through this change in the environment? Maybe there is a genetic component that predisposes us. Because generally we think of hypermobile EDS falling into the hereditary disorders of connective tissue. How does that work?

[16:38] Dr. Anne Maitland: I look at how connective tissue can go awry as either having intrinsic defects in the collagen or extracellular matrix, or having defects in the components of the immune system that have the ability to modify the connective tissue. I would argue that hypermobile Ehlers-Danlos syndrome and hypermobile EDS spectrum disorder is an acquired connective tissue disorder, because I think the genetic mutations are actually in the immune system that has the ability to react to the environment. And it can start in utero, which has been shown by several experiments.
[17:26] If you look at children born in Harlem who live within a block of a bus depot, those children are much more likely to have intrinsic asthma, not allergic asthma. They'll start off with intrinsic asthma, which will then cultivate into allergic asthma. But if you go 5 blocks away, they're less likely to develop it. And here's the thing: everybody thinks about mast cells coming from the bone marrow. No — they actually come out of the embryonal sac. They march along as the embryo is dividing, with the mast cells and the nerves talking within the connective tissue to modify the connective tissue.
[18:18] Think about the fact that we warn women there are certain exposures they should not put themselves at risk for if they're pregnant, because those exposures can affect the development of the baby. That includes food, infections, and chemical exposures. Think about DES, which was used for individuals having horrible morning sickness. The point is, I think it's important to understand that in order to maintain your metabolism, you have to maintain this homeostasis of bringing in what you need and excluding what may be dangerous or what I would call "frenemies" — squatters who are waiting for an opportunity to get in and cause problems. So you have to have an intact barrier. But that barrier is under attack from things that you drink, that you apply to your skin, and from a climate that — think about all the individuals that develop hives from cold or water or sunlight or vibration.
[19:37] Some of these individuals who have chronic urticaria, now called chronic inducible urticaria, where it's the nerves telling the mast cells to go off — researchers have shown that if you have chronic urticaria, you're at increased risk for developing autoimmune and hypersensitivity disorders, and you have a higher risk of comorbidities for diabetes and neuropsychiatric issues. And actually, autoimmune mast cell disease is more common than any of the top 5 autoimmune diseases that we have.

[20:19] Dacre Knight: And so — I'm just getting this summarized in my mind too, because I've gone through your paper, Dr. Maitland, it's excellent. What you described then as the epithelial barrier hypothesis is that there's epithelial insult that is picked up, manipulated through the body, and then we see all these reactions. Is that a fair summary?

[20:49] Dr. Anne Maitland: One of the earliest papers I saw regarding the risk of developing peanut allergies in children was out of Europe. You know what the biggest risk factor was? Mothers who were using cold-pressed peanut oil to moisturize their baby's skin.

[21:06] Dacre Knight: Wow.

[21:09] Dr. Anne Maitland: So literally — and we know that sensitization can go through the skin. Everybody thinks it goes through the gut. It actually starts earlier than that. And because it goes unrecognized and unchecked, the more you keep ringing that danger signal, the more the mast cells are going to call in help. And the help that they typically call in, unless there are other signals, are going to be eosinophils.
[21:36] Think about some of the disorders we see — for instance, University of Cincinnati Children's Hospital showed that children who were hypermobile or had a connective tissue disease, whether you're talking Ehlers-Danlos syndrome or Marfan's, were 3 times as likely to develop eosinophilic esophagitis. And that finding was published about 15 years ago.

[21:59] Dacre Knight: And that's to keep in mind — certainly gut, but really any epithelial layer, skin or otherwise, can be a point of concern. Exactly. As you mentioned with the peanut oil. And that just adds to the surface area that could be at risk. I'll also bring in another point: our human species has been evolving over the past 300,000 years or so, and so much has changed in such a recent, minor fraction of that whole span of time. If we think about plastics — these were not around beyond the middle of the 20th century. We're getting a lot more understanding about microplastics and things like that. I presume you think that folds into this as well, the concern of microplastics and so forth?

[23:01] Dr. Anne Maitland: The one example I always use is The Graduate, where the neighbor says the future is plastics. I still remember a commercial from the early 1980s where they said plastic was the future, and I was like, "What does that mean?"
[23:23] Some individuals are so sensitive — especially hypermobile people — that they have to have special IV tubing. I'll give you an example. I had a woman who spent 2 years doing IVF to get pregnant and she was having twins. She was iron deficient, so the hematologist was giving her iron. Every time she got a dose, she was just itchy. He gave her Benadryl. He's like, "I'll just pre-medicate you next time." He pre-medicated her with Benadryl, and she got itchy and started to wheeze. So he said, "You're going to go see Maitland." And what he did — he sent over the IV tubing, the alcohol preps, and the iron preparation.
Everybody thinks the iron can do it. But what's really interesting — and what people don't know — is that DEHP and PVC are typically found in cheaper IV tubing. They will not allow that IV tubing in PICUs and NICUs because it has been shown that nobody tells us, but because it's much more expensive, that tubing will interfere with the development of the urinary tract of premature males. So all I did was go over to the NICU when I was at Mount Sinai and say, "Can I get some tubing?" I brought it back and gave her IV fluids with a slow IV push. And this is why we make recommendations for anybody who has hypersensitivity issues: be careful with the tubing. Don't push fast, because if you push, you will elute off that chemical right into the vasculature, which will be considered an injury by the connective tissue, and then you'll end up with an infusion reaction, which is really a nerve-mediated vascular mast cell response.
[25:27] If you think about what kind of IV tubing was available before the cheap plastic stuff — that was stuff that got autoclaved. My dad was a surgeon, and everything was in glass. Syringes were glass, Petri dishes were glass, everything was glass. The conversion over to plastic only happened in the late '80s and early '90s when the HIV epidemic was taking off and everybody was worried about whether we were autoclaving enough to kill whatever was in that tubing.
[26:14] Just think about the fact that certain individuals can't drink water out of plastic bottles. They had to remove BPA. In order to have more inexpensive, more abundant goods — whether we're talking clothing, engineered hardwood in our homes, or our food — things have been added to make them more abundant and cheaper. But our exposures have changed enormously. And I'll tell you, there've been 3 lawsuits that illustrate how what we wear, the time we spend indoors, and the air we breathe are all implicated.
[26:58] We already talked about babies being born near a bus depot or a farm where they're doing aerial fertilizing. The unmet need for rhinitis, asthma, and food allergies is an urban issue, but it's also a rural issue because of dumping and spreading.

[27:31] Dacre Knight: Spreading and spraying.

[27:33] Dr. Anne Maitland: Right. Take Lumber Liquidators — they had a huge lawsuit because they imported engineered hardwood from China that was off-gassing formaldehyde, installed in numerous homes. They had to do tens of millions of dollars in payouts. And all of a sudden, Lumber Liquidators became LLC, and that LLC just filed for bankruptcy. That's one.
[28:04] Number two, Delta Airlines — they're celebrating 100 years, and I look at those commercials and think, didn't they have a lawsuit back in the '80s? The way they made those uniforms actually caused people to develop rashes, and they had to pull the clothing line. And Dr. Bluestein, Dr. Knight, you have to admit you have patients who can't get into new cars or new homes because they're off-gassing.

[28:38] Dr. Linda Bluestein: Oh yeah.

[28:39] Dr. Anne Maitland: And what do you think is detecting that off-gassing? That's not the mast cells. That's the epithelial barrier and the somatosensory nerves.

[28:47] Dr. Linda Bluestein: That's so fascinating on a couple of points. One, I have a family member who was just recently in the hospital and received multiple antibiotics through slow IV push. And as an anesthesiologist, I know that slow IV push doesn't always mean that slow — people want to get on to their next task. And this is somebody who has a known or likely mast cell problem. They felt very ill every time something was pushed. So that's so interesting, because I knew the tubing could be problematic, but they were in a hospital setting, so hopefully they had at least somewhat better quality tubing. I worry about infusion centers that are probably going to buy the least expensive thing. So the million-dollar question: what do people ask for?

[29:39] Dr. Anne Maitland: Unfortunately, we have the rich door and the poor door. You can request that type of tubing if you're paying for it out of pocket. And in the hospital, I still have patients that have reactions. There are some tricks I've learned along the way. I will coat the syringe and the tubing with a little bit of Benadryl beforehand — just to stabilize, get that Benadryl in first.

[30:14] Dacre Knight: Like liquid Benadryl?

[30:15] Dr. Anne Maitland: Yes. Put it in a bag and run it first. And same thing with famotidine, because the H2 receptors are all on the vasculature. Put it in the bag, run it slow, and then run whatever you're going to do.
[30:33] But one receptor that is getting more attention from allergy immunology is called the MRGPRX2. This is the receptor responsible for Red Man syndrome from vancomycin. It has the ability to detect anesthetic agents and antibiotics like fluoroquinolones, which is why we tell people — and I'm going to date myself here — there was a fluoroquinolone pulled off the market in the early 2000s called trovafloxacin, which was used for a lot of gastrointestinal infections. It was great for killing those GI bugs, but also great for killing the liver, and so it got pulled from the market. This is also why we tell people, if you have a urinary tract infection or respiratory infection and you're on one of these fluoroquinolones, you might not want to exercise. And this is why we tell a lot of patients who already have joint laxity that can be influenced by mast cells inappropriately releasing these chemicals to be careful.
[31:47] And I want to point out — everybody treats mast cells as a one-trick pony. They were identified in the 1860s in frogs. Last time I checked, I've never seen a peanut cause anaphylaxis in a frog. And they didn't get a formal job until 1989. So 100 years after they were identified in every part of the human body, they got a job — when we started seeing a rise in allergen-triggered mast cell disease. From 1989 to 2000, we started seeing a huge rise in people having reactions, and allergy testing didn't explain it, and systemic mastocytosis — which is a clonal mast cell disease — didn't explain it either. So that's where the term mast cell activation syndrome comes in: we know you're reacting, but it's not due to allergies, and it's not due to a clonal mast cell disease. So we say your mast cells are twitchy.
[32:55] Focusing on mast cell degranulation or secretion of certain chemicals that cause hypersensitivity reactions is too narrow, because mast cells release a lot of chemicals. Checking a heparin level to see whether you're having a hypersensitivity reaction doesn't make sense to me, because heparin could be released because mast cells participate in tissue remodeling. This is a multifunctional cell that produces a lot of chemicals, including enzymes that can modify the connective tissue. If we start thinking about mast cells being twitchy, the next question is: why are they twitchy? And are you sure you're not missing something else that looks like twitchy mast cells?
[33:45] We put a paper out in 2022 — a retrospective study with over 980 patients coming in saying "I have mast cell activation." Interestingly, out of those 980 people, 1 out of 5 had evidence of mast cell activation disease, because tryptase isn't released in every type of hypersensitivity mast cell-triggered event. They also had evidence of hypermobility. And interestingly, they had evidence of antibody deficiency — meaning the mast cells did not have enough antibodies to recognize a bacteria or a virus. Because it was less efficient in recognizing that pathogen, it's like a police officer showing up to a fire. Lovely that you're here, but do you know how to put out that fire? The police officer, being a good servant to the community, is going to do their best, but they can potentially make the situation worse.
[35:06] This is what mast cells do in that scenario. It has to be Goldilocks. You want them doing that activity to contain a danger. But if they keep on thinking cold temperature, or a certain wave of sunlight, or a perfume you walked into a store with is a danger, now you're releasing chemicals that can kill, that can change blood flow inappropriately. And without a pathogen there to absorb all those wonderful chew-'em-up chemicals, it is the connective tissue that takes the hit.

[35:42] Dr. Linda Bluestein: This is such fabulous information. We're going to need to take a quick break. When we come back, we're going to talk about some of the specifics regarding diagnosis and differential diagnosis — because clinicians listening are going to want to know: when working somebody up, what do I do? What tests should I order? What diagnosis or differential should I be thinking of? But also, I know people are going to want to know what we can do about this. What are the treatment options? We're going to take a quick break, and when we come back, we are going to be talking more with Dr. Maitland about this such important topic.

[36:19] Dacre Knight: We'll be right back.

[37:13] Dr. Anne Maitland: And we're back with Dr. Anne Maitland, who's been enlightening us in all things related to mast cell. And just to get right into it — I know we've got a lot of area still to cover. I have this experience, and I'm sure Dr. Bluestein does as well. A patient would describe various symptoms — what may be thought of as allergies or some hypersensitivity — and then they report that they've been to the allergist, their testing was normal. So allergy testing's normal, looks great. But just to make sure that we validate patients and don't miss patients that would otherwise fit certain models of assessment, what things do you look for, and would you tell others to look for, that trigger ideas about mast cells and give some direction to treat?

[38:11] Dr. Anne Maitland: If you're going to use the lens of nerve-immune disruption — and more specifically, if you want to use the proposed criteria, and understand we still need more help with the criteria — I've been using the same criteria, and there are 4 things.
[38:30] Do you have evidence of multi-organ system involvement? Knowing that the top 3 manifestations of individuals having mast cell activation syndrome is the skin, the gut, and neuropsychiatric. Secondly — and it can happen in any organ system — for instance, interstitial cystitis or bladder pain syndrome: in the United Kingdom, they diagnose this by doing a biopsy of the bladder and staining for mast cells, because if you don't stain for mast cells, you won't see them. And the bladder wall is chock-full of mast cells. That's how they secure the diagnosis. And remember, we know that 1 out of 5 Americans has chronic spontaneous urticaria or chronic inducible urticaria for more than 6 weeks. Not small. So we know the skin is taking a hit. If you have somebody who is flushing, itching, or breaking out in hives or swelling, that's one system, and you only need two systems to go to the next criteria.
[39:38] Are you having irregular heartbeats? I had a patient who was eating one of these cereals that had almond flour in it, and she didn't know she had an almond allergy. So she was actually having low-grade anaphylaxis every time she had breakfast. The way we define anaphylaxis — besides, you know, "you know it when you see it" — is that if you have skin, gut, and neuropsychiatric symptoms, including labile brain fog or mood disorders, they need to be counted. And so I have a standardized questionnaire of classic immediate mast cell-triggered events that impact the skin, the gut, the brain, the central nervous system, the urinary tract, and the joints. I count them all and give the patient the benefit of the doubt — someone who has had, on average, 6 to 20 years of symptoms.
[40:41] Then: do you get better with medications? Not cured, but do you have some improvement with agents that go after some of the mediators that cause these hypersensitivity events? And by the way, I can check a tryptase all day long for food-induced anaphylaxis and it's never elevated. So we have to look at other markers — methylhistamine and prostaglandin metabolites. And keep in mind they're also made by basophils and neutrophils. So is this definitively a mast cell problem? The gold standard to identify whether these tissue-resident immune cells are problematic is to look at them in the tissue. Everybody gets scoped, and you can stain for mast cells because, again, if you don't look for them, you won't see them. I have a hematology-oncology colleague who asked to go back and look at endoscopies and colonoscopies and see if mast cells are misbehaving. But we don't have enough data to say, as with eosinophilic disease, if you have this many mast cells, is this mast cell activation disease or not?
So I lean into knowing the risk of all these hypersensitivity disorders. If you get better with diphenhydramine, loratadine, famotidine, leukotrienes, or you get on omalizumab or Xolair for your urticaria or asthma, or Dupilumab for other indications — that indicates your mast cells may be contributing.
[42:32] Generally speaking, mast cells will not just stand down. Just rotating antihistamines and parking people on a diagnosis of MCAS is a disservice, in my opinion. You need to figure out why your mast cells are misbehaving. It breaks down to two things: either you have broken mast cells — something going on within the gene structure of the mast cells themselves — so systemic mastocytosis and monoclonal mast cell activation syndrome, which are rare, with less than 35,000 cases in the US. What's not so rare is hyper-alpha tryptasemia. The equivalent is thinking about a police officer who, instead of walking around with a six-shooter, is walking around with an AR-15. When the mast cell degranulates, the effect is amplified. Interestingly, hyper-alpha tryptasemia is an autosomal dominant inherited mast cell problem that affects at least 6% of the Caucasian population. When this was reported in 2016 — right around when we came out with the new criteria for EDS — what was fascinating is that although it's autosomal dominant inherited, it wasn't fully penetrant for all those who inherited those increased copy numbers, which tells me the mast cells have to be triggered to release. I've taken care of fraternal twins who had HAT, and one was horribly unwell and one was okay.
[44:16] So you've gotten the story, you've seen whether they respond to medications that keep the mast cells quiet, and you have lab data that suggests it. Now you want to figure out: do you have broken mast cells? And the majority of patients I see — it's not broken mast cells, it's mast cells breaking bad. You have positive allergy tests. You have antibodies against the mast cells, which is chronic spontaneous urticaria, prevalent in the US. You have people with undiagnosed immunodeficiency disorders — using the fire analogy, the police show up because the fire trucks haven't come. That's what immunodeficiency is. You have an undiagnosed complement disorder.
[45:02] And this is where I'll pivot quickly to infectious agents. The pathogen that causes Lyme disease — there's a great story coming out of MIT from the Tal lab showing that Borrelia, which causes Lyme disease, spends one-fifth of its genome avoiding the complement system. So if you have an undiagnosed complement disorder, you see that bug, but you don't know how to fight it because it has figured out how to get around your systems. That's why we're seeing a spectrum of disease from this one pathogen. And that's no different from COVID — why are we seeing a spectrum of disease? Because it's a dance: it's the pathogen and what you're bringing to that party, and not everybody's bringing the same tools.
[46:06] So: misbehaving mast cells, two or more organ systems, getting better with tricyclic agents, biologics that target mast cells, antihistamines, leukotriene antagonists, and mast cell stabilizers such as ketotifen or cromolyn. And it's hit or miss with those medications because mast cells can cause hypersensitivity disorders without degranulation — that's why cromolyn or ketotifen might not work, and they have different activity in different organ systems.
[46:41] Then the second set of tests addresses why your mast cells are misbehaving. I will do a screen — if you haven't had allergy testing, I'll repeat it through the blood, and I'll also look at your total IgE level and see what protection you have against things I hope you were vaccinated against, like strep and pertussis. We're now picking up, thanks to South Carolina's measles epidemic, people who've been vaccinated against measles but have no protection against it. So there are people running around with immunodeficiency disorders who don't know it.
[47:18] And then the thing I learned back in 2011 is when I find somebody who is bendy and tall: hypermobility travels with hypersensitivity. Why? Because we know that people who are bendy have proprioceptive deficits. Which means that somatosensory network that's supposed to be keeping the mast cells quiet — through CGRP or glutamate or substance P — is instead triggering those mast cells because the proprioception is saying, "I don't like where you are in space right now. I close my eyes, my feet are up, and I can't settle down." So we have a lot of people who have restless sleep because their proprioception is not telling them they're in a safe space. Or I'll hear, "I was a dancer, then I twisted my ankle and I was like a house of cards — I could never go back to dance." Or, "I can swim like a fish, but I can't run on land." These are all clues that something's going on with how your body perceives where it is. Your GPS is a little bit off.
[48:27] So I will screen for immune dysregulation, I will screen for proprioceptive issues, and I will screen with a questionnaire — borrowing from the French, who've been doing this for 25 years. They have a 9-question questionnaire where if you answer 5 of those questions as positive, you have greater than a 97% chance of having an Ehlers-Danlos variant.

[48:54] Dacre Knight: Wow. Well, that's all to say there's a lot more going on than just allergy versus non-allergy. And if you're told that you don't have an allergy, there's much more to think about, as you just illustrated for us. Thank you so much.

[49:13] Dr. Linda Bluestein: And I want to make sure that we get these resources, because I can anticipate the emails coming. I want to see those questionnaires you mentioned. So if you're able to share any of that with us, we can either link it in the show notes or share those as resources on the website, because this is so important. You're talking about workups that people can do — if it's a clinician listening, or they're working with a clinician who's open-minded and willing to do these things, fantastic. But I also want to move on to talking about treatment, because there are going to be people listening to this who don't have somebody to help work this up. Maybe they can do some things on their own — like you were talking about avoiding microplastics, making some swaps in the foods they're consuming, various over-the-counter medications, maybe some supplements or things like that. So can you give us some ideas of next steps that patients can take?

[50:12] Dr. Anne Maitland: I definitely do avoidance measures. I tell patients to be careful, and I say cotton is a safe choice — including underwear. I would also say stick with hypoallergenic products like CeraVe or Vanicream because they don't have all those fragrances and additives that allow them to sit on the shelf. Stay away from processed foods because those additives and emulsifiers are direct hits to your gastrointestinal lining. Try to get outside and walk. Don't rely on your car — just try to walk and maintain your conditioning.
[50:54] And I have to tell you, I've seen individuals who have cervical spine instability who get the surgery, which restores the vagus and adrenergic balance, and their hypersensitivity reactions start to ease off. So this is where working with an occupational, physical, or speech therapist who's knowledgeable about your hypermobility and tissue fragility really matters. I had a patient last summer who was 17 and likes to ride horses. She fell off a horse and kept complaining that every time she lifted her hands a certain way, she had a lot of pain. I told her she couldn't go back to horseback riding and couldn't do volleyball until that got evaluated. She was evaluated by a physical medicine person who didn't appreciate we had an upright MRI, and sent her for swimming, which was safe — but the swimming PT didn't know that she was hypermobile and had her do stuff on land first, including a plank, which caused her more pain. It's really important that you go to people who are EDS-savvy if you're going to do physical therapy, because conditioning goes a long way.
[52:23] We have women who have increased susceptibility to bad menses and really bad mood disorders around their cycle. There's something to be said about exercise and getting that estrogen more balanced, because nerves and mast cells look for change. And if that change is happening every 28 days, they're going to go off every 28 days. So using medications to keep things quiet — being a little heavy-handed when you know your cycle is coming with an H1 and H2 blocker — goes a long way. There are some authors out of Minnesota who talked about the role of vaginal suppositories that contain either Benadryl or cromolyn. And cromolyn is hit or miss, but if it works for you, I find it works really well on the skin, even if it doesn't work on the gut. There are eye drops and nose drops, and a preparation for the lungs as well.
[53:34] Doing physical therapy in the water is better for proprioception. And you want to stay conditioned. Also, I'd be really careful about limiting your diet. In all the years I've been doing this, I've never recommended a histamine-free diet — I don't know what that means. I've had chronic inducible urticaria for 25 years. I eat strawberries, I eat all this stuff, and I don't have a problem. So I follow the diet typically recommended for people with eosinophilic gastrointestinal disease as a guideline. Just do it for a couple of weeks, see if you see an improvement in symptoms, because I don't want you becoming nutritionally compromised.
[54:19] I cannot tell you how many people come through whose vitamin C level by blood is undetectable — like they've been on a pirate ship for the past 6 months. B1 and B2 are down. And I also tell them with their cookware: please stay away from those nonstick pans. Use steel or iron, stick with glass as much as possible for storage of foods and drinking vessels. Then again: clothing, what you eat, and restoring that sleep-wake cycle is really important. Get that brain to calm down. And if it can't, you need to figure out why.

[55:08] Dr. Linda Bluestein: There are so many things here. I made several notes that I wanted to follow up on. First of all, cotton underwear — not to be TMI, but yes, that changed my life. That's for the boys and the girls.

[55:21] Dr. Anne Maitland: Boys and the girls.

[55:25] Dr. Linda Bluestein: Oh yeah. It is shocking to me, and that is why this podcast is so important to me — because there are little things we can do that can be hugely impactful. And I have had a couple of patients who thought they were going to need cervical fusion or craniosacral fusion, and they were able to avoid the surgery because we got their mast cells, their immune system, and their epithelial barrier all under better control through these modifications you're talking about. And their instability improved dramatically enough that they did not need the surgery. I'm a fan of everything you just said. I use CromolinCermelin eye drops myself. What about ceramic cookware? Are you familiar with that? I've read it's supposed to be okay, and that's what I replaced mine with.

[56:20] Dr. Anne Maitland: Definitely agree with you — ceramic is great. What I like about iron skillets: throw some peppers in there if you tolerate it. That's a good way to get iron and vitamin C. Avoiding things that can leach into your foodstuffs and beverages is really, really important. Those nonstick pans — I don't know exactly what chemicals they're using to prevent your food from sticking, but it's getting into your food.
[56:57] The child that taught me I was a miseducated allergy-immunology specialist — although I had suspected it for years — was a 4-year-old who had seen over 40 practitioners, 10 of them allergy-immunology specialists who tested him for allergies related to his anaphylaxis, his asthma, and his regression in neurocognitive milestones. I just listened to the story. He came out rashy — he was hiving when he came out. And the pediatrician did the first thing right: "I don't know what you have." If you only have 15 minutes to talk to a patient, slow your roll before you throw them onto a diagnosis. He said, "I want you to try some simple things. Keep breastfeeding, stay away from processed cow's milk, keep your diet straightforward, use cotton, and avoid those indoor play parks because they're just festering with heaven knows what." And he got better for a year. He was running, playing, no joint pain, no anaphylaxis, no asthma.
[58:14] That pediatrician retired. A pediatrician who had just graduated from residency said, "Why isn't your child on milk?" And here's where someone who does not have the life experience of a seasoned practitioner will cause you to slide right back into a bad place. Within 2 days, he was hiving, having asthma, having reactions to foods. He went up and down I-95 to all the named pediatric hospitals and their specialists — gastroenterology, psychiatry, nutrition, dermatology, pulmonology — and they all said allergy, allergy, allergy, except for the 10 allergists who said, "No, your IgE is less than 10 and every test we looked at is negative."
[59:20] So he was in my office when I was in private practice in Tarrytown. He was sitting on the floor in a W, and I'm internal medicine trained, but I remember thinking, "I don't think a 4-year-old should be sitting on the floor in a W." Then I looked at his mom and said, "You're kind of long and lanky. Do you have Marfan's?" And she said, "No, I think I have Ehlers-Danlos." And that's when I realized I had had one board question on Ehlers-Danlos, and I literally said, "You're not going to blow a blood vessel in front of me, are you?" And she said, "No, I think I have the classic type" — because we weren't up to that terminology yet. I said, "I don't know anything about that. Hold on." I had no problem taking out my phone. I said, "You know what? I only know two cells that can do this: nerves and mast cells." And we started appreciating that nerve-triggered mast cell urticaria was coming out with cold, vibration, and pressure.
[1:00:27] So I said, let's keep it simple. Cotton. If you're still breastfeeding, keep breastfeeding, but take out milk. Take out the Big 6. I want you to start using cromolyn, and start with the cream first. He did great. He went from 6 foods to 168 foods within a year. No anaphylaxis, no asthma, no rhinitis. He had a rescue inhaler when needed. He was using cromolyn eye drops and — for practitioners — cromolyn nebulizer. People focus so much on the 100mg per 5mL formulation, but the 20mg per 2mL is still out there. As a nebulizer, it's great because it doesn't get absorbed — it's great for physical-triggered asthma. You can actually take a couple of those vials and throw them into a cream, so you don't have to be reliant on nasal cromolyn. If the child is using a mask, you're getting the nose and the lungs covered. And the skin quiets. You have two major barriers with a little extra protection against this incoming toxic environment.
[1:01:44] That was my aha moment: I've been taught that if people have multi-organ system symptoms, it's allergy or not allergy. And "not allergy" was this huge, non-existent bucket. That's when I got into identifying these cases, and I actually presented an abstract to one of our national organizations with 2 families and 2 other individuals. All their IgE levels were less than 10, their tryptase was less than 3, and I said mast cells are misbehaving. By the way, they get better when I use antihistamines and cromolyn, and they're bendy. And the past president of this organization said, "Are you telling me I need to bend people to see whether or not they have a mast cell problem?" And I said, "Yep." That's why I kind of fell into EDS.

[1:02:39] Dacre Knight: Well, you actually took a lot of the questions I came in with and nailed them. Thank you for putting all those things together on treatment. I know we're about at our time, but reflecting back on our conversation from the beginning — we're talking about epithelial barriers and what we've done with modern technology and foods and drugs and everything. We've made great advances, right? There are great medical miracles we've come upon, but at the same time, it's almost like we created some diseases of our own through this development and progress. And the goal is that we don't want our developments in technology and commercialization to continue creating more diseases that are just more of a burden. We want to actually make progress.
I've referred in other conversations to Dr. William Mayo's adage that the ideal of medicine is to prevent disease, or to no longer need physicians. But I foresee — and you may agree — that the way things are going, we are probably going to need allergists and immunologists for a long time yet. Thinking about the message to patients and what we've been discussing — I do counsel patients on this because there are certainly a lot of things to be aware of, triggers to be careful about. My question is: do you think it's a single trigger they're exposed to, or is it a sequence of triggers? And how do you counsel patients to live functionally so they're not in a bubble? So we can enjoy our lives and not just try to isolate ourselves. It's a balance, I presume, and you've probably refined that over many years. If I could get one last question in: how do you walk that line?

[1:04:43] Dr. Anne Maitland: The last time I checked, tolerance never comes from avoidance. So it starts with a medical home, which a lot of these patients don't have access to for lots of different reasons.
[1:05:18] In this country overall, there's only 1 allergy-immunology specialist for every 60,000 residents. So there's very little exposure in medical school — definitely less unless you do a rotation. A lot of people: you don't see it, you don't know it. I think it's important to find a practitioner. And if anybody knows me, they know I don't particularly care for the term "provider." I've been studying too long to be called a provider. You need that patient-practitioner partnership. Different 3 P's.

[1:05:58] Dacre Knight: You can't just leave someone off on their own, right?

[1:06:05] Dr. Anne Maitland: It shouldn't be, "You don't have this, so I can't help you anymore," which is not true. That old adage of "if you can't measure it, you can't help it" is malarkey. If you can't measure it, that means you have more questions to pursue — which is what Francis Peabody said during the Golden Age of Medicine, where one of his sections addressed: what do you do about the patients who have nothing the matter with them by the tests, but have multi-organ system involvement? Unfortunately, we lean so heavily into sickness that we're not able to see paths to wellness.
[1:06:44] So the first thing I would tell patients is: you need to partner with a practitioner who can help you navigate this very rugged healthcare system. I just met a young lady who was seen by a gastroenterologist outside of the state of South Carolina who actually came in with a timer on his lapel and said, within 15 minutes — ding — "You have Crohn's disease."

[1:07:21] Dr. Linda Bluestein: Oh my God.

[1:07:24] Dr. Anne Maitland: Drive-through healthcare advice. So: acknowledge this is a disability. Simplify things as you try to understand why they're having these hypersensitivity reactions. Is this a structural issue? Is this an intrinsic immune system issue? The nerves get caught in the middle. And then start doing empirical trials.
[1:08:01] I tell patients 5 things, and I tell them to use this framework across the 2 visits that I'm allowed to see patients — I'm working on that. Does this practitioner have an idea about what's going on with you? An idea. What can I give you to make you feel better while I'm trying to figure this out, because this has been going on for more than a minute? Whatever I give you, I need to warn you about major side effects. Then: what kind of testing am I going to do to try to figure out what I think is going on? And: when are you going to come back? Which means there are going to be empirical trials. I try to weigh the risk and benefit of those trials. Some will be a step forward. I pray and work hard to make sure it's nothing more than a little sidestep as opposed to a slip back.
[1:09:01] And if you can find somebody who's willing and able to listen to you and work with you and learn with you — that's what you're going to need. Because there's not enough of us in this space. Until we get there, I think it's important that patients educate themselves — listening to podcasts like this, YouTube videos, several societies. You have the Mast Cell Disease Society, you have the Dysautonomia Project, you have Dysautonomia International, you have the Ehlers-Danlos Society. Dr. Knight, you're having an EDS symposium. We're having a symposium at the Medical University of South Carolina. And keeping those dialogues going while we develop other educational avenues beyond the ECHO programs — like, what can we do to have group visits for patients? Because I feel in many ways I'm repeating the same information with each patient. Can we develop novel visit structures that'll be helpful and covered by insurance, so not everybody gets shut out just because they don't have the right insurance or can't get to Virginia or South Carolina?
[1:10:27] On the practitioner side: get off your high horse. Seriously. I was humbled a long time ago, and I have no problem admitting I make mistakes. But if you give the person your best educated advice and say, "I'm not sending you out with a medication and then seeing you in 3 months with no follow-up" — building that medical home is really, really important. That foundation is being challenged by a lot of things going on in our current healthcare system. And it's not just our system — you go across the pond, it's the same thing, but for different reasons.
[1:11:13] We have to get these observations out and accelerate, because there's a lot of information that needs to be cut through. The adage from 20 years ago is still the same: a newly appreciated observation takes 15 to 20 years to get into the general biomedical community. So it's patience. And not everybody can get into South Carolina, but I will offer peer-to-peer consultations. If you have a practitioner who's willing to learn, I'm willing to get on the phone. There's a small fee, just because it's taking away from time regarding my responsibilities at MUSC and all that Dr. Knight is trying to do at the University of Virginia.
[1:12:09] Education, education, education. Education to accelerate appropriate testing. Education based on scientific research to ask: do we have better ways to figure out that mast cells are misbehaving besides taking a piece of your skin, your bone marrow, or your gut? There has to be a better way. I appreciate that this nerve-mast cell issue causes neuropsychiatric issues — mood disorders, attention deficit disorders — the band-aid got ripped off on that with COVID. This model, I believe, applies to chronic fatigue, to long COVID, to individuals who had some type of accident or infectious or chemical exposure that took that final Jenga piece.
[1:13:05] And people who are bendy — a lot of them don't appreciate they're bendy because they say, "I'm not as bendy as that person in the yoga class." Well, that doesn't mean you're not bendy. And joint stiffness does not exclude joint hypermobility. So it's education of the practitioners, education of the healthcare system. If you want to reduce the cost of these patients who are going to 20 different specialists and primary care and jumping around — if you want to reduce that bill, let's start doing some more tailored, targeted testing.

[1:13:51] Dr. Linda Bluestein: I really do think we could save the healthcare system a lot of money if we paid more attention, listened to people better instead of these 5-minute visits in and out where we're never getting to the bottom of things. I totally agree. And I think that was also your hack for us, right? The partnering with a healthcare practitioner. Because I sometimes hear patients say, "I'm not going to go back to that doctor because they didn't know how to pronounce Ehlers-Danlos."

[1:14:27] Dr. Anne Maitland: It's not good enough.

[1:14:29] Dr. Linda Bluestein: That very well might not matter if they are compassionate and if they want to learn and want to help you — that's what you need. I've heard Dr. Knight say that in presentations as well, and I've been saying it to people for years.

[1:14:42] Dr. Anne Maitland: Seriously. I had to learn all of this. I didn't learn it at any of the places I trained. But let's end on a happy note. There is a critical mass of healthcare practitioners and clinician scientists now. And I love the program that Chip Norris has at MUSC, because he now has a lecture in the first-year medical school class. He has sponsored lunches — and if you just feed them, they'll come.

[1:15:26] Dr. Linda Bluestein: That is true.

[1:15:27] Dr. Anne Maitland: And with my clinic, I now have medical students rotating through. I have 3rd-year medical students coming through and every single one has said, "I didn't know about this. I didn't know about this." And they take it to other places where they're rotating. Those practitioners say, "I have EDS patients — I didn't know that MUSC had an EDS center." I won't say that too much because we're still dealing with a huge waitlist, but we're trying to spread the word. A lot of practitioners think there's nothing that can be done. And if I can stop a physical therapist or a rheumatologist from saying, "Yes, you're hypermobile, but there's nothing that can be done" — if I can stop that, that's a win.

[1:16:21] Dr. Linda Bluestein: For sure. I want to point out just a couple of quick things before we wrap up. Number one, we will attach the Big 6 to our resources, because I know Dr. Maitland mentioned the Big 6 and people are probably going, "What's the Big 6?" So we'll make sure to give you that as well. And I also want to point out, because we were using the word "bendy" — there are people who are bendy who are just fine. I have friends who are bendy in their 70s and they're just fine. They grew up in a different environment, so maybe their epithelial barriers have fared better. I just want to point out that distinction: there are people who are more or less bendy but have lots of immune dysfunction, and there are people who are quite bendy but who, for various other factors, function really well. There's so much that goes into this, and this has been such a fantastic conversation. I really appreciate both of you being here.
[1:17:16] Before we go, Dr. Maitland, can you tell us where we can learn more about you and share any special things you want us to know?

[1:17:25] Dr. Anne Maitland: Thank you for the invitation. I always enjoy catching up with kindred spirits in this space. MUSC is really cultivating a program, so that's one resource. I also still have a private practice where I'm able to do peer-to-peer consultations, and that's called Clinical Paradigms. And there are books I've written chapters in that I think are very helpful. The one I recommend most is called Transforming Ehlers-Danlos Syndrome: An Epigenetic Phenomenon. The first author is Daens, D-A-E-N-S. This work was anchored out of the French EDS Center, which was anchored by physical medicine and rehabilitation, and they have a lot of good personal hacks.
[1:18:23] I do want to emphasize: if you suspect you have POTS or orthostatic intolerance, I lean into the Bateman-Horne Clinic — I don't think people need to be subjected to a tilt table. I think just doing orthostatics appropriately will give you an answer about whether there is dysregulation of that nerve-mast cell component. And then again: the Mast Cell Disease Society, TMS for a Cure, the Ehlers-Danlos Society, the Dysautonomia Project. I also have a couple of chapters coming out in books that address neuropsychiatric nerve-epithelial barrier-mast cell dysfunction.

[1:19:17] Dacre Knight: I'm looking forward to those.

[1:19:19] Dr. Anne Maitland: Yeah.

[1:19:19] Dr. Linda Bluestein: Me too. And I think both of you are hosting conferences in April. Dr. Knight, can you tell us briefly about the conference you're hosting, and then Dr. Maitland can tell us about hers?

[1:19:32] Dacre Knight: Absolutely. If you liked what you heard today with Dr. Anne Maitland, I'm pleased to share that she'll be speaking at our symposium on April 9th and 10th. It's available online — you can register online — and it is also in person here in Charlottesville, Virginia. Registration is free, so anyone is welcome to attend. I don't have a link offhand, but if you just type "Ehlers-Danlos Symposium UVA" into Google, you'll see it. Feel free to register and get more of Dr. Maitland.

[1:20:05] Dr. Anne Maitland: Flowers and chocolate are in the mail.

[1:20:07] Dr. Linda Bluestein: No.

[1:20:11] Dacre Knight: Well, first of all, I appreciate that invitation. And to pivot to what we're doing: it's called mind2026.org, and that's April 21st — that's the EDS Day. We're bringing in some great speakers to review that nerve-mast cell dysregulation and how joint hypermobility can be used as a screen for neuropsychiatric issues. We're really looking at that barrier-mind disconnect that has happened and has been fractured in our modernization of the environment.

[1:20:53] Dr. Linda Bluestein: Wonderful. Thank you so much to both of you for being here. Dr. Maitland, I really appreciate you sharing this super valuable information. What a great lens through which to look at these conditions that we've known are complex and multidimensional. We've been struggling in some regards, although we have lots of tools — and that's why this is so important for people to listen to, share, and spread the word. It's an easy way for people to get information, they don't have to leave their house, and it's accessible to most everyone. Thank you again.

[1:21:27] Dr. Anne Maitland: My pleasure. We're all about keeping hope alive.

[1:22:31] Dr. Linda Bluestein: Well, that was such a fantastic conversation with Dr. Maitland, with co-host Dr. Knight, looking at these conditions with a completely different lens — because we know there is so much more to being hypermobile, to having connective tissue disorders, mast cell activation syndrome, dysautonomia, and so on. It's so important to keep our minds open and think of all the possible ways in which our immune system and other systems could be contributing to our symptoms.
[1:23:04] Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, the Bendy Bulletin, which you can find on Substack at hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood.
[1:23:32] And don't forget — full video episodes are available every week on YouTube at Bendy Bodies Podcast. As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them. You can learn more about these options on the services page at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at Hypermobility MD.
[1:23:56] As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also want to share some of their helpful resources. For questions or appointment inquiries, you can contact the UVA EDS Center at [email protected]. Again, that's the letter R as in Robert, UVA EDS Center at uvahealth.org. You can find answers to common questions at uvahealth.com/support/eds/FAQ.
[1:24:26] Our incredible production team is Human Content. You can find them on TikTok and Instagram at Human Content Pods. As you know, we love bringing on guests with unique perspectives to share. However, these unscripted discussions do not necessarily reflect the views or opinions held by me or the Bendy Bodies team. Although we may share healthcare perspectives on the podcast, no statements made on Bendy Bodies should be considered medical advice. Please always consult with a qualified healthcare provider regarding your own care. For more information about the Bendy Bodies Program disclaimer and ethics policy, submission verification and licensing terms, HIPAA release terms, or to get in touch with us, please visit bendybodiespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.