Is Your EDS Party Trick Causing Long-Term Damage? | Office Hours

[00:53] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. Today we're going to be doing another episode where you guys are my guest. Periodically, I will be doing these solo episodes, so be sure to submit your questions on the website. Also, be sure to sign up for the Bendy Bulletin on the Bendy Bodies Podcast so you don't miss any updates.
[01:14] In this episode, I will cover mast cells and neurogenic inflammation. How can you tell if a surgeon is knowledgeable about EDS and the mast cell activation spectrum? Stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Here we go.
[01:40] I'm going to start out with a question from David. David says, hello, I am a family medicine and hospitalist physician in Anchorage, Alaska, and am a frequent listener to your show. It's great and very informative. I am in the midst of listening to your new episode about hormones and have a comment as to the mentioned risks of testosterone. As it turned out, I attended virtually a fantastic conference recently held by Harvard in January called Testosterone Therapy and Sexual Dysfunction. We will put a link to this course in the show notes, although this is a past course. Hopefully they'll be running it again. It was a really fantastic conference. I highly recommend it.
[02:22] The reason I'm writing to you about it is because amongst other things I learned in the course is that there was a recent randomized controlled trial in 2023 studying a large high-risk population about the safety of testosterone therapy called the TRAVERS trial. It was mentioned in almost every talk as being a paradigm-shifting study and one that finally provides sufficient data to debunk many of the theoretical claims against testosterone therapy. We will also link that paper that talks about the cardiovascular risks. This study has spun off multiple papers. However, there's essentially no increased risk for cardiovascular events, no increased risk for prostate cancer, no increased symptoms for BPH, which is benign prostatic hypertrophy, and no statistically significant increase in VTE, which is clotting-type events. Very fascinating. Guidelines, however, have yet to catch up.
[03:16] Also of note, there was a discussion at the conference about PSA, or prostate-specific antigen, being dependent on testosterone, and so with low testosterone, if it is falsely low, it will rise only as testosterone is replenished. Once receptors are saturated, however, it will plateau and not rise further. The urologists in this conference were discussing more the legal implications of the outdated guidelines and the need to be attentive to those ideas of risks — more for that purpose than for actual risk to patients. Anyway, just thought you would find it interesting. Thanks for your podcast, David.
[03:52] Okay, so first of all, I would like to share that this course was about testosterone replacement therapy in men and women, and hopefully it will be held again. I'll share the link in the show notes. It probably was designed for healthcare professionals, but it still might be interesting for a lot of people. And I did want to share a little bit more about the TRAVERS study because I do think that there might be a little bit of misinterpretation on one of the elements of this study.
[04:18] So this was a study that was published in the New England Journal of Medicine, and in this study they looked at testosterone replacement therapy in men with hypogonadism. So that's when the sex glands are producing little to no hormones. These men either had pre-existing cardiovascular disease or they had elevated cardiovascular risk. It was a large sample — over 5,000 men were studied — and they were randomized into two groups. One group received the testosterone replacement therapy, the other group received a placebo. They also studied these men for several years, which is really great, and they looked at the risk of major adverse cardiovascular events, including death, myocardial infarction, and stroke.
[05:02] What did they find? They found that there was no difference in terms of the major adverse cardiovascular events when they compared the testosterone group to the placebo group. However, when they did look at the rates of a few other things, they did find a higher incidence in the testosterone replacement therapy group. They found a higher incidence of atrial fibrillation — that's where the heart is beating abnormally from the top part of the heart, which is kind of like wiggling and not really contracting normally. They did also find an increased risk of pulmonary emboli, which is where you get blood clots in the lungs. And they also found an increased risk of renal insufficiency in the testosterone replacement therapy group as compared to the placebo group.
[05:51] So this was a really great study, very, very important. They did also find increased hemoglobin levels and higher levels of energy. But these other findings are just really important to note because when it comes to testosterone replacement therapy, we're starting to get more and more data. I still think that there are so many people who can benefit from it, but we also need to really consider each person's individual risk profile before we go ahead and write that prescription.
[06:21] The next question is from Jesse. Jesse asks, "Hi, I know most of us bendy people have bigger problems, but I'm still human. I'm wondering what we need to know when it comes to cosmetic treatments like facials, lip cavitation, or even just cupping, radiofrequency, microdermabrasion, or even a facelift. I've worked really hard to figure out how to manage my body in order to feel good. I plan to live for a long time and I'd like to look as good as I feel. Also, droopy eyelids run in my family and an upper blepharoplasty — so that's the surgery where they remove the skin here, which actually I really need — will likely be medically necessary at some point. Why not do it early and enjoy it more? But will these treatments cause more problems? Are there certain things that are better than others?"
[07:14] So I really like this question because I feel like it comes up a lot, but it doesn't really get discussed very much. Cosmetic treatments, whether it's facials, microdermabrasion, or surgical procedures like a blepharoplasty, they can pose unique risks for individuals with connective tissue disorders like the Ehlers-Danlos syndromes because their extracellular matrix is more fragile.
[07:38] So these are some important considerations. People with EDS and related conditions can have more fragile skin. They can have delayed wound healing, and they can have an increased risk of scarring or wound dehiscence after procedures. Wound dehiscence is where the wound is closed by the surgeon, but then it breaks — it actually splits back open rather than healing normally and forming a normal scar. Some people also get excessive bleeding and hematoma formation because they have fragile blood vessel walls and/or platelet problems.
There are some non-invasive treatments such as microfocused ultrasound that have shown promise in improving skin laxity without significant complications in EDS patients. That also avoids injectable collagen stimulation, which can be risky if you do have fragile blood vessels. It's important if you do consider microdermabrasion or facials to be aware that you might have allergies or a mast cell reaction to some of the products. And these should be performed very gently in order to avoid skin tears or bruising.
[08:45] Procedures like blepharoplasty or facelifts carry a higher risk because you need to suture fragile tissues. There can be some modifications such as conservative tissue handling and limited excision. You also want to consider the risks associated with anesthesia, which I have covered a number of times in other podcast episodes and also cover very extensively in a paper that I published with my colleague and mentor, Dr. Pradeep Chopra. We'll be sure to add a link to that paper in the show notes, so I definitely recommend that you check that out if you're going to be having any type of anesthesia or surgery.
[09:19] If you do have a treatment like Botox or fillers, that can exacerbate joint instability or muscle weakness and definitely should be approached very cautiously. Consider lower doses and really precise targeting.
[09:36] So the things that I think are most important to consider are, first, pretreatment planning. It's really, really important to think about how you've healed in the past. If you're somebody who has had procedures and maybe you do have EDS, but you've healed pretty well — you've never had wound dehiscence where the wound breaks open, maybe you've had some wider scars or slower healing, but it hasn't been terrible — that's very different from people who have had wound dehiscence and other major problems. So the first thing I would urge you to consider is how you've handled surgery in the past.
[10:13] Also, you want to make sure that your surgeon is well-informed about EDS and related conditions. I will be talking later about how you can determine if your surgeon actually seems knowledgeable about these conditions or not. Whenever possible, you want to consider using minimally invasive or noninvasive methods in order to reduce trauma to the skin. You want to make sure you have close monitoring and proper wound care in order to minimize complications. You might want to consider getting multiple opinions and collaborating between the dermatologist, the surgeons, and other specialists so that your treatments are tailored as safely as possible.
[10:51] I do also want to share an example. This is a patient of mine who has severe tissue fragility and laxity, and she recently had an upper blepharoplasty and actually did extremely well. I was honestly not in favor of her having the surgery — I was very, very concerned about the risks — but her surgeon seemed very attuned to EDS, and I had written a letter for her to share with the anesthesia team and the surgery team. This letter can also be used in the event that she needs to go to the emergency department for some reason. I've written a lot of these letters for both clients and patients, and they've all reported that they've been very well received.
[11:31] It's also important to make sure to check out that paper that I mentioned, and also I recently posted about this on Instagram and Facebook. That was also a case of somebody who I thought might not do really well, but actually she did extremely well with this blepharoplasty. Blepharoplasty does sometimes become medically necessary if your upper lids are so droopy — like mine are starting to be — that it actually impairs your ability to read and use your eyes, especially later in the day. So sometimes that's not an elective procedure.
[12:05] Okay, let's move on to the next question. This is from Mandy. Hello, Dr. Bluestein. First, thank you for doing this podcast. I just found it, and thank you for sharing your own journey. I was once an ER nurse for 15 years but had to leave the bedside because of my body and hands, so your story brought me to tears with your validation. Just thank you. I have classical EDS. Have you thought about doing an episode on Raynaud's syndrome and/or small fiber neuropathy? I developed Raynaud's about 3 years ago, and it really sucks. And I've had small fiber neuropathy for many, many years, treated with LDN, or low-dose naltrexone. She also shares that she is being treated by Heather Purdon, who is her PT, and she's really, really lucky to have her on her team because she really loves her. I did interview Dr. Purdon on the podcast, and we'll share that link in the show notes as well. Anyway, thank you for the insights and for doing this podcast.
[13:05] Okay, so let's talk a little bit about Raynaud's and EDS. Raynaud's syndrome is where the blood vessels clamp down in your hands and your feet when you get cold, and sometimes they turn really, really white. In fact, you can sometimes see a really distinct demarcation where the blood flow stops and the fingers turn white. Sometimes it's only some of the fingers or toes, and sometimes it's all of them. As they start to then get the blood flow coming back, you can literally see the color changing back in the skin.
[13:41] So why do these things seem to happen together more often? First of all, EDS is characterized by problems with the extracellular matrix, which is the part of the body that makes up the connective tissue, which includes collagen, fibronectin, and a number of other components. This is the part that's outside of the cells, and that can compromise the integrity of the blood vessel walls and predispose people to exaggerated vascular responses, such as the blood vessel spasms we see in Raynaud's phenomenon.
[14:14] Also, many people with EDS experience autonomic dysfunction, such as dysautonomia or postural orthostatic tachycardia syndrome. These conditions can mimic or exacerbate Raynaud's symptoms because they can cause venous pooling and impaired blood flow regulation. There are studies that indicate that Raynaud's phenomenon occurs in a significant proportion of EDS patients, with rates as high as 38% in subtypes such as hypermobile EDS. There can also be secondary Raynaud's phenomenon — such as when it arises due to the underlying connective tissue disorder rather than being its own primary condition.
[14:53] So what are the clinical implications? People with both conditions can experience color changes in their extremities — they can turn white, blue, or red. They can become extremely sensitive to cold and become very painful during episodes. I even have some patients who experience these episodes even when they're not cold. Severe cases can actually lead to tissue damage or even ulcers due to poor circulation. The treatment generally focuses on lifestyle changes such as avoiding cold exposure, stress management, and medications like calcium channel blockers to improve blood flow. It's also important, if there is autonomic dysfunction, to address that in order to have comprehensive care.
[15:36] Okay, so what about small fiber neuropathy? Small fiber neuropathy is being increasingly recognized as a common comorbidity in EDS and HSD. But what is small fiber neuropathy? It's where there's damage or dysfunction of small nerve fibers — specifically A-delta and C fibers — which are responsible for transmitting sensations of pain and temperature and also for autonomic functions such as heart rate, blood pressure, digestion, and sweating.
[16:06] Some of the symptoms include burning pain, tingling, numbness, hypersensitivity to temperature changes, and autonomic dysfunction such as orthostatic intolerance, gastrointestinal problems, and abnormal sweating. Research shows that there is a high prevalence of small fiber neuropathy in people with hypermobile EDS. Skin biopsies are often important and reveal reduced intraepidermal nerve fiber density in this population. Small fiber neuropathy may overlap with other manifestations such as dysautonomia and chronic pain. The connective tissue abnormalities in EDS may contribute to nerve damage or dysfunction, and fragile vascular tissue and impaired tissue repair could also exacerbate this nerve fiber degradation.
[16:58] In terms of potential mechanisms, some cases of small fiber neuropathy in EDS are suspected to have an autoimmune or idiopathic component — idiopathic meaning we don't know what causes it. Small fiber neuropathy can absolutely underlie some cases of dysautonomia or autonomic dysfunction, such as POTS, or postural orthostatic tachycardia syndrome, which we know is really common in people with hypermobile EDS. Heat sensitivity and heart rate abnormalities are shared by both conditions.
[17:41] The diagnosis of small fiber neuropathy typically involves clinical evaluation, quantitative sensory testing, and skin biopsy. These methods can confirm loss or dysfunction of small fiber nerves. The management focuses on symptom relief and addressing underlying causes. Pain medications can be used, such as anti-seizure drugs, analgesics, and antidepressants. Low-dose naltrexone can be extremely beneficial, as this listener mentions. I also find ketotifen for pain often very helpful — that's an H1 antihistamine that I've discussed in other podcast episodes. And we can also see immunomodulatory therapies such as intravenous immunoglobulin, or IVIG, that can also help if an autoimmune component is identified. Other things that can be helpful include lifestyle changes, physical therapy, and multidisciplinary care.
[18:37] Okay, let's move on to the next question from Anne. Hello, huge fan of the Bendy Bodies Podcast. I am hypermobile and my boyfriend has hypermobile EDS, so I find it super informative. I was curious if you could talk about transness and hypermobility. My boyfriend, and many of my hypermobile/EDS friends are trans, and I've read some papers about the higher occurrence of hypermobility in trans populations and vice versa. I have not found much research on it and worry that it could be misinterpreted to pathologize transness. So I'd be curious about the possible connection, or how gender-affirming care might differ in hypermobile populations. Thank you. Love the podcast.
[19:17] Thank you, Anne, so much for your question. Research has identified a notable association between EDS and transgender or gender diverse identities, especially among adolescents. So what are some of the key findings? There was a recent study that identified that approximately 17% of adolescents with EDS report gender dysphoria, which is significantly higher than the general U.S. adolescent population, where about 1.3% identify as transgender or gender diverse. Among these individuals, 61% identified as transgender, 14% as non-binary, and smaller percentages as gender fluid or agender. Most transgender individuals with EDS were assigned female at birth and were predominantly diagnosed with hypermobile EDS. The average age of EDS diagnosis was about 13.5 years.
[20:18] So there are some shared characteristics. Both EDS and transgender populations often experience high rates of psychiatric issues like anxiety, depression, and fatigue, and also autonomic dysfunction like postural orthostatic tachycardia syndrome. These shared challenges can contribute to overlapping and complex healthcare needs.
[20:41] Are there any potential explanations for the link? The exact cause of the association is definitely unclear. There are some hypotheses, such as shared neurodivergent traits, because neurodivergence tends to be common in both TGD and EDS populations. There are also sociocultural factors that influence the visibility and reporting of gender diversity in chronic illness communities.
[21:06] What are the clinical implications? Both groups of people require multidisciplinary care that addresses both their connective tissue disorder and gender-affirming needs. This includes managing chronic pain, fatigue, and mental health while ensuring access to affirming care. Medical professionals should be aware of this intersection in order to provide comprehensive and affirming care tailored to this unique population.
[21:33] So in conclusion, the higher prevalence of gender dysphoria among individuals with EDS and HSD highlights a need for further research into the biological, psychological, and social factors underlying this association. It also underscores the importance of integrating gender-affirming practices into multidisciplinary care for EDS patients to improve outcomes and quality of life.
[21:58] Okay, next I want to talk about mast cell activation syndrome and what I think it should be renamed as, which is mast cell activation spectrum. The acronym would, of course, stay the same, but I think that the spectrum concept is very, very important. Why do I think that? Well, first of all, MCAS presents with a wide range of symptoms across multiple organ systems. You see things in the skin like flushing and hives; you see symptoms in the gastrointestinal tract such as diarrhea and abdominal pain; you see cardiovascular symptoms like tachycardia, or high heart rate, and hypotension, which is low blood pressure; and you see neurologic problems such as headache and brain fog.
[22:43] There's such a wide variability in terms of symptom severity and triggers, and to me, that really supports the concept of a spectrum. We also see really, really diverse triggers that can vary from day to day. People with MCAS can experience symptoms triggered by such a broad array of factors such as stress, environmental changes, food, or fragrances — and we're going to talk more about fragrances later on. This variability also aligns with the notion of a spectrum rather than a uniform single condition.
[23:16] Mast cell activation syndrome also overlaps with a lot of other mast cell-related disorders such as hereditary alpha-tryptasemia and also systemic mastocytosis. Recognizing this as a spectrum may help us understand these connections better and recognize the shared and also different pathophysiology.
[23:36] There is also a lot of variability in the diagnostic criteria. Not all patients with mast cell activation symptoms meet strict diagnostic criteria for MCAS. Some may have episodic symptoms and may never have clear laboratory evidence of mast cell mediator release. We know that tryptase and other mediators are very thermolabile, meaning that they are very, very sensitive to changes in temperature. I believe that elevated tryptase is very helpful because it's a very specific mast cell mediator, but it should not be necessary for the diagnosis.
[24:10] The progression and severity of MCAS also varies significantly. Symptoms can wax and wane over time within the same individual, and this dynamic nature further supports framing MCAS as part of a spectrum rather than as a syndrome. That spectrum does include primary MCAS and secondary MCAS — secondary MCAS occurs secondary to another condition such as immune deficiency.
[24:38] Also, the treatment approaches vary significantly. Treatments for MCAS range from mast cell stabilizers, antihistamines, and leukotriene inhibitors to more targeted therapies in severe cases. This variability reflects the diverse manifestation of mast cell activation disorders. Be sure to listen to some of the other episodes where I discuss some of my favorite mast cell treatments such as low-dose naltrexone, ketotifen, and cromolyn.
[25:16] I feel that referring to it as mast cell activation spectrum could help clinicians and researchers better capture the wide range of presentations and tailor their care accordingly. This terminology shift would emphasize the diversity and complexity of mast cell activation disorders, potentially improving understanding and management.
We're going to take a quick break, and when we come back, we are going to talk about fragrances, EMFs, and party tricks. We'll be right back.
[27:13] Okay, so next I want to talk about party tricks and circus tricks. I was working with a client the other day who was sharing with me how they used to do all these party tricks and circus tricks, but now they've become painful. And this is such a common story. For example, I used to pop my hips in and out. I used to, when I was at a party with friends, put my feet behind my head. I would crawl around on my elbows. I would do all kinds of crazy tricks. And those people who do these tricks definitely know what I'm talking about.
[27:45] I've shared on Instagram a post about the fun phase of party tricks and circus tricks and being hypermobile. And it can be really, really fun to be able to do these crazy things with your body. The problem is that it can be hard to stop the pain once these things become painful. Sometimes doing these party tricks is not painful, and then all of a sudden they start becoming painful. And even if you stop doing the party tricks, the pain doesn't go away.
[28:15] So I would encourage people who do have party tricks or circus tricks — unless you're in the circus and getting paid to do them, that's a different story — to maybe do these tricks, have somebody videotape you doing them, but then don't do them anymore. That way you have documentation of the fact that you could do those, but you're not doing them anymore.
[28:35] Okay, next topic: EMFs, or electromagnetic fields, and mast cells. Somebody pointed out during a previous episode that I neglected to talk about EMFs and mast cells, so this is for you. Some key points about the relationships between mast cells and electromagnetic fields. First, I should back up and explain what mast cells are. If you've listened to other episodes, hopefully you know, but mast cells are a part of the immune system — defenders that come and help you when you're exposed to an infection, a virus, some kind of pathogen, or some kind of chemical exposure.
[29:21] Mast cells are sensitive to EMFs, such as those from mobile phones, Wi-Fi, and other electronic devices. EMFs can actually increase mast cell numbers and trigger degranulation, which can lead to the release of inflammatory mediators like histamine, cytokines, and prostaglandins, which can contribute to pain. EMF-induced mast cell activation can contribute to symptoms like headache, skin irritation, fatigue, and sleep disturbances.
[29:46] There are some people who have EHS, or electromagnetic hypersensitivity, and they report systemic symptoms resembling mast cell activation syndrome, including cardiovascular issues and GI discomfort. EMFs may also disrupt the blood-brain barrier by promoting mast cell degranulation in the dura mater. The dura mater is the lining or coating outside the brain and the spinal cord. This can lead to neuroinflammation and symptoms like migraine or cognitive dysfunction.
[31:15] Mast cells in the skin are particularly sensitive to EMF exposure. This can cause local inflammation, erythema, itching, or even screen dermatitis in people exposed to video display terminals or other devices. Cardiac mast cells can even degranulate upon EMF exposure, potentially contributing to heart-related symptoms such as palpitations or arrhythmias.
There is definitely a wide range of sensitivity. Some people with pre-existing mast cell disorders may be more sensitive to EMFs due to their heightened reactivity to environmental triggers. Conversely, chronic EMF exposure may exacerbate MCAS symptoms. While research studies demonstrate clear effects of EMFs on mast cells, human studies are limited. We need much more research in order to clarify the mechanisms and health implications of chronic EMF exposure on mast cells.
[31:26] You can reduce EMF exposure by limiting use of electronic devices, using shielding materials, or creating low-EMF environments. You can also address underlying mast cell activation through antihistamines or other MCAS treatments that can reduce sensitivity to EMFs. So in summary, there is growing evidence that EMFs can activate mast cells and contribute to inflammation and related symptoms. This interaction is particularly relevant for individuals with heightened mast cell reactivity or electromagnetic hypersensitivity.
[31:59] I also want to talk a little bit about mast cells and neurogenic inflammation, or inflammation in the nervous system. Mast cells lie close to peripheral nerve endings and are among the first responders to sensory nerve activation. Neuropeptides such as substance P and calcitonin gene-related peptide are released from sensory nerves, and they activate mast cells via specific receptors. You may have heard of calcitonin gene-related peptide, or CGRP, because there are now a whole host of CGRP antagonists on the market for migraine.
[32:35] Mast cell degranulation occurs, and they release histamine, tryptase, cytokines, and chemokines, which can amplify the inflammatory response and contribute to neurogenic inflammation. Mast cells also release proteases, which contribute to the degradation of connective tissue. They act like Pac-Man and kind of go around and chew up your connective tissue, which is why it's so important to stabilize your mast cells.
[32:59] We end up with bidirectional communication — a neuroimmune feedback loop where the mast cell mediators further stimulate sensory nerves, leading to the release of more neuropeptides. There is also an axon reflex mechanism where neurogenic inflammation spreads through axon reflexes, which travel along nerve fibers to activate nearby mast cells and amplify the response.
[33:24] Why does this matter? Mast cell activation contributes to mechanical and thermal hyperalgesia by sensitizing nociceptors, or the pain-sensitizing nerves. There are also vascular effects: mediators like histamine and CGRP increase vascular permeability and vasodilation, which leads to edema or swelling, redness — and this is characteristic of neurogenic inflammation. Neurogenic inflammation involving mast cells is also implicated in conditions such as migraines, endometriosis, CRPS or complex regional pain syndrome, fibromyalgia, asthma, eczema, psoriasis, and irritable bowel syndrome.
[34:05] Why is this important? Because stabilizing mast cells may help reduce pain and neurogenic inflammation in chronic pain and inflammatory conditions. This intricate relationship highlights the role of mast cells as key mediators in neurogenic inflammation and their contribution to various inflammatory diseases.
[34:25] Okay, next I want to address a client question. I was working with a client the other day who was anticipating having surgery, and they wanted to know: how can I tell if my surgeon truly understands EDS? And first, I would say you can't — it's very, very hard to tell. They may say that they know, but they don't know. In fact, in some cases, it might actually be better if they don't say that they know, but they are willing to go do a little bit of research. So I wouldn't just ask if they know about EDS.
[34:53] I suggest instead that you ask this very specific question to see how knowledgeable they are about EDS and connective tissue disorders. This is what I would ask: How do you change your surgical techniques for someone with a connective tissue disorder? If they respond to that question by saying, "I don't," or "I'm careful with everybody," that doesn't necessarily mean it's a bad thing, but you would like to hear something that indicates that they do at least know what EDS and connective tissue disorders are.
[35:29] If they go on to say, "Oh yes, I've operated on a number of people with EDS, and I take extra time with the closure, I might put in some extra sutures, I might leave the sutures in a little bit longer" — or if they really go into some detail about how they've treated people with connective tissue disorders differently — then I would say that that person sounds like they really do understand the difference between somebody who has more typical connective tissue versus somebody who has less typical connective tissue.
[36:02] Okay, next I want to talk about the author Rebecca Yarros and how she has been raising awareness about EDS through her series of books. Rebecca Yarros is somebody who has hypermobile EDS, and she was diagnosed in her early 20s and has apparently undergone multiple surgeries including major shoulder reconstruction. She has shared that all four of her sons live with hypermobile EDS and related conditions such as POTS, postural orthostatic tachycardia syndrome, scoliosis, and pectus excavatum — that is where the sternum, or breastbone, is kind of caved in.
[36:41] Rebecca Yarros is a New York Times bestselling author, and one of her characters, Violet Sorrengail, in Fourth Wing, is portrayed with symptoms resembling hypermobile EDS. She has joint hypermobility, chronic pain, and needs physical adaptations to cope with her challenges. I love how Yarros shares Violet's struggles in order to provide visibility to these conditions that can otherwise be invisible to so many. Violet's struggles reflect Yarros's own experiences with EDS, which provides visibility to invisible disabilities.
[37:18] Violet is also a powerfully disabled character who uses intelligence and resilience to overcome challenges, redefining traditional fantasy hero archetypes. Yarros uses her platform to educate others about EDS and advocate for better representation of chronic illnesses in the media. The success of Fourth Wing has brought EDS into mainstream conversations, inspiring readers to embrace their own challenges. Yarros shares that writing Violet's story was cathartic for her, allowing her to reflect on her own adaptations and resilience in navigating life with EDS.
[37:54] It's also very exciting news that Fourth Wing is being adapted into a multi-season television series by Amazon MGM Studios. This marks a significant step in bringing disability representation to mainstream media. It has not only created compelling narratives but also amplified awareness about EDS through authentic storytelling, inspiring readers, and fostering greater understanding of chronic illnesses.
[38:19] I would also like to share a public service announcement about fragrances. I was working with a patient the other day who has a very, very complex illness, multiple problems, has undergone some very serious surgeries recently, has had post-op infections and all kinds of things going on, and has been needing to fly to numerous doctor's appointments. She shared a story about being on a flight and having a flight attendant walk past her without noticing anything particularly unusual. The flight attendant then went into the bathroom, and when she came out and walked past her about 10 minutes later, this patient got an overwhelming smell of fragrance. So clearly the flight attendant had sprayed herself with perfume in the bathroom.
[39:03] So I want to share some quick points about fragrances and mast cell activation syndrome. Fragrances can be problematic for so many people, and in this person's case, they were having a near medical emergency on the plane because of this flight attendant spraying herself with perfume. Fragrances — whether it's perfume, cologne, or scented personal care products — can act as triggers for mast cell activation and release inflammatory mediators like histamine. Mast cell reactions to fragrances can cause all kinds of symptoms: headache, chest tightness, wheezing, mucosal irritation, reduced pulmonary function, exacerbations of asthma, and skin issues like rashes or dermatitis.
[39:53] Fragrances also contain VOCs, or volatile organic compounds, and synthetic chemicals that can irritate mast cells in sensitive individuals. In some cases, fragrance exposure can lead to systemic mast cell activation and potentially life-threatening symptoms such as anaphylaxis. It's very important that we all be aware of how many people are sensitive to fragrances. Opting for fragrance-free or hypoallergenic products is recommended for all of us to minimize triggers. There are plenty of natural cleaning alternatives, and we can all take steps to protect our fellow mankind.
[40:31] As you may know, we end every episode with a hypermobility hack, and this hypermobility hack is going to be a mythbuster. Joint hypermobility, EDS, and hypermobility spectrum disorder all present in very diverse ways. There are so many people though who think that everyone who has these conditions looks like a lean ballerina, but the person could be short, stocky, or full-figured. They can look so many different ways. You cannot really tell by looking. Sometimes you can tell if someone has a hypermobile joint by looking, but you absolutely cannot rule out these conditions without a full physical exam, which ideally occurs in person.
[41:11] I've said this before, but I'm sharing it again today because a listener commented that they were in the hospital, very ill, under a bunch of blankets, and a hospitalist came by to see them. In their chart, it said that they had EDS or suspected EDS. And this listener commented that the hospitalist, looking at them from across the room while they were under the blankets, said, "I can tell by looking at you that you don't have EDS." Well, that's absolutely impossible. You cannot tell, looking at someone underneath blankets, that a person does or does not have EDS.
[41:51] Now, of course, that hospitalist hopefully had already looked at the person's chart, so maybe they had read some things that made them think they don't suspect the person has EDS, but they certainly could have phrased it in a very different way. And most likely they really don't know much about EDS, because if they did, they would know that you really need to examine someone fully in order to assess whether or not they have hypermobile EDS or HSD, hypermobility spectrum disorder.
Hypermobility spectrum disorder is the condition that we diagnose people with if they have symptomatic joint hypermobility but don't have another condition to explain their symptoms. There are millions and millions of people who have hypermobile EDS or HSD and do not know it. Doctors don't know to look for it. So this is a huge, huge problem. It's especially a huge problem because there are so many things that we can do to help people feel better.
[42:49] The common narrative of "it doesn't matter if you have a diagnosis because there's nothing you can do" is the one that drives me absolutely the most crazy. And that's what motivates me to keep doing this podcast and sharing with you some solutions and some things that you can do to help yourself feel better. So I hope you will check out some of the other episodes that also share practical hacks and tips for living your best life.
[43:16] Well, that's it for today's episode. I hope you found this helpful. Thank you so much for listening to this week's episode of the Bendy Bodies with the Hypermobility MD Podcast. You can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions.
[43:37] You can dig deeper by meeting with me one-on-one. Check out the available options on the services page of my website at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn @hypermobilitymd. You can find Human Content, my producing team, at Human Content Pods on TikTok and Instagram. You'll find full video episodes up every week on YouTube at Bendy Bodies Podcast.
[44:04] To learn about the Bendy Bodies Program disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to reach out with any questions, 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.