#Connectivetissuedisorder

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#Connectivetissuedisorder Reel by @just.em.brace.it - Key things to know: * not everyone who is hypermobile has EDS or another connective tissue disorder (20% of the world population is hypermobile) * t
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@just.em.brace.it
Key things to know: * not everyone who is hypermobile has EDS or another connective tissue disorder (20% of the world population is hypermobile) * the Beighton scale was designed as a simple, rapid epidemiological screening tool * joints within the scoring system are predominantly of the upper limb and disregard many of the major joints (aka some of the joints I show in this video: hips, shoulders, neck, back) Source: NIH The Beighton Score as a measure of generalised joint hypermobility https://pmc.ncbi.nlm.nih.gov/articles/PMC8390395/ #ehlersdanlos #beightonscore #hypermobility
#Connectivetissuedisorder Reel by @dr.melissakoehl.pt (verified account) - I swear this is not a flex or me showing off! I'm serious! I legitimately limit myself to this 1x/year test when it comes to splits and I keep waiti
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@dr.melissakoehl.pt
I swear this is not a flex or me showing off! I’m serious! I legitimately limit myself to this 1x/year test when it comes to splits and I keep waiting for them to stiffen up….which it can do in many people….but it hasn’t happened yet. My hips are very hypermobile and, because of that, they give me A LOT of trouble. So if you can easily do the splits, I’m sorry… because that level of mobility often comes with some baggage that takes extra work to control. This doesn’t mean you’re doomed. You can absolutely be hypermobile without having a connective tissue disorder. But if you’re “naturally flexible,” it usually means you’re hypermobile — and it’s worth being fully evaluated by someone who understands the current criteria. The EDS Society website is a great place to start.
And of course, there’s a ton of info here too! I also send weekly-ish emails packed with helpful hypermobility tips (and people tell me they’re entertaining… I do try 😅). If you want to go deeper into all things bendy-human, there’s a link in my bio to join the list. Did this help clarify the difference between hypermobility and flexibility? 
I’d love to hear what you think in the comments. #EhlersDanlosSyndrome #hEDS #EDS #Hypermobility
#Connectivetissuedisorder Reel by @thetravelinghaloofhope - Debunking the false info out there about my medical journey. My head was not decapitated as if it were totally cut off completely & then put back on.
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@thetravelinghaloofhope
Debunking the false info out there about my medical journey. My head was not decapitated as if it were totally cut off completely & then put back on. It didn't happen from my original accident when I was 16. it didn't happen when attacked by my neighbor's dog in 2020. it happened in August 2016 during an attempted halo brace removal. I had been fused C3-T2 4 months prior. When the halo bars were loosened my skull slid forward into my throat I had severe severe craniocervical instability. The ligaments were shot & ai sustained an INTERNAL decapitation. If it had to happen being in the neurosurgeon's office was the right place. My surgeon stabilized my head with his hands after I threw my chair on its hind legs. i felt my skull slide back. There was a total disconnect between my brain & R side of my body. The neuro symptoms were so scary. I had surgery 5 days later to fuse my skull-C2 to my previous C3-T2 fusion. I have an underlying genetic connective tissue disorder called Ehlers-Danlos Syndrome. Collagen is like the glue that holds your body together. Think of it as a foundation to a house. In me my collagen is faulty. So like a bad foundation to a house the house will wiggle & wobble & have problems. Same as my body. happy to answer questions 🫶 #ehlersdanlos #ehleradanlossyndrome #strength #craniocervicalinstability #spinalfusion
#Connectivetissuedisorder Reel by @dr.clairfrancomano - Classical Ehlers-Danlos syndrome (cEDS) is a heritable connective tissue disorder that causes joint hypermobility, skin hyperextensibility (stretchy s
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@dr.clairfrancomano
Classical Ehlers-Danlos syndrome (cEDS) is a heritable connective tissue disorder that causes joint hypermobility, skin hyperextensibility (stretchy skin), and skin fragility. People with cEDS have fragile skin that is very easily and extensively damaged. Minor trauma can cause large wounds that result in atrophic scarring from a young age in people with cEDS.
#Connectivetissuedisorder Reel by @centerforcomplexneurology - Vascular Ehlers-Danlos Syndrome (vEDS) & Genetic Testing Presented by Dr. David Saperstein. 𝐯𝐄𝐃𝐒 (𝐕𝐚𝐬𝐜𝐮𝐥𝐚𝐫 𝐄𝐡𝐥𝐞𝐫𝐬-𝐃𝐚𝐧𝐥𝐨𝐬 𝐒𝐲
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@centerforcomplexneurology
Vascular Ehlers-Danlos Syndrome (vEDS) & Genetic Testing Presented by Dr. David Saperstein. 𝐯𝐄𝐃𝐒 (𝐕𝐚𝐬𝐜𝐮𝐥𝐚𝐫 𝐄𝐡𝐥𝐞𝐫𝐬-𝐃𝐚𝐧𝐥𝐨𝐬 𝐒𝐲𝐧𝐝𝐫𝐨𝐦𝐞) is an uncommon, dominantly inherited, genetic connective tissue disorder. vEDS is rare and patients usually have a very characteristic appearance to their face and skin (skin is very translucent and veins are very prominent). Vascular Type EDS is considered the most serious form of EDS due to the possibility of arterial or organ rupture. Although joint hypermobility occurs, it is much less prominent in vEDS than the other more common types and is mainly confined to the hands. The Center for Complex Neurology, EDS & POTS is dedicated to caring for patients with complex neurological problems, including Vascular Ehlers-Danlos Syndrome. EDS is often an invisible disability and it is important to have the right physicians in your corner. #complexneurology #veds #vascularehlersdanlos #vascularehlersdanlossyndrome #vasculareds #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlosawareness #classicaleds #classicallikeeds #cardiacvalvularehlersdanlossyndrome #hypermobileehlersdanlossyndrome #arthrochalasiaeds #dermatosparaxisehlersdanlossyndrome #kyphoscolioticeds #brittlecorneasyndrome #spondylodysplasticeds #musculocontractualeds #myopathiceds #periodontaleds #hypermobility #arizona #phoenix #drdavidsaperstein
#Connectivetissuedisorder Reel by @doc_ashtonn (verified account) - Hypermobility isn't just "bendy joints" it can be the tip of the iceberg to an underlying connective tissue disorder like hEDS or HSD I like to thin
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@doc_ashtonn
Hypermobility isn’t just “bendy joints” it can be the tip of the iceberg to an underlying connective tissue disorder like hEDS or HSD I like to think of it as a a whole “Pie” of symptoms and comorbidities, made up of different sized slices, and everyone’s pie looks different. In this reel I’m acting out a few common pieces, but everyone’s pieces may be different. Your pieces might be fatigue, pain, Dysautonomia, MCAS reactions, IBS issues, instability, or none of the above. That’s why two people with hEDS/HSD can look completely different! No two zebras are identical It’s not about one symptom, it’s about addressing the unique combination of pieces that makes up your pie. So if your slice sizes or ingredients look different to someone else’s, that’s ok, your journey will be different to others which is why it’s important to understand your own needs and make a plan based on you’re own individual pie. *this post is for information purposes only and is not a substitute for medical advice. For individual help please book an appointment with me via the link in my bio ❤️
#Connectivetissuedisorder Reel by @thepersistenthorrors - I traveled 100 miles for a year and a half after waiting for months to see one of the true specialist physical therapists for my conditions. I truly b
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@thepersistenthorrors
I traveled 100 miles for a year and a half after waiting for months to see one of the true specialist physical therapists for my conditions. I truly believe access to this is a blessing and was what kept me in far better condition and with a higher quality of life than what is typical with such scary conditions, and my neurosurgeon’s have all agreed and sing PT’s praises. I fought and sacrificed to show up for PT, spending thousands just to get there and back. We moved to a different state just to be nearby. A few months before I had my most recent surgery for spinal manifestations of connective tissue disorder, my PT had to go on medical leave. (cont in comments) (VD: view of a treadmill and a young woman walking wearing sneakers and purple leggings with the text “sometimes things are out of your control but your response remains within your influence and it’s important you know how powerful your response can be”) #hEDS #chronicillness #raredisease #spinalmanifestationsctd #craniocervicalinstability
#Connectivetissuedisorder Reel by @_physioveda - Comment your answer 👇🏻 👇🏻 👇🏻 Follow @_physioveda for daily clinical MCQs . . . . . . . . . . . . . . . . . . . . . . . Ehlers-Danlos Syndrom
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@_physioveda
Comment your answer 👇🏻 👇🏻 👇🏻 Follow @_physioveda for daily clinical MCQs . . . . . . . . . . . . . . . . . . . . . . . Ehlers-Danlos Syndrome ➡ A genetic connective tissue disorder. ➡ Characterized by joint hypermobility and elastic skin. ➡ Caused by defect in collagen formation. #physiotherapy #viral #medicalstudent #physio #doctor
#Connectivetissuedisorder Reel by @charlotteamylouise (verified account) - Everyone just thought I was accident-prone 🤷‍♀️ That and me being competitive, so I'd throw myself into sport at school, get injured and show up the
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@charlotteamylouise
Everyone just thought I was accident-prone 🤷‍♀️ That and me being competitive, so I’d throw myself into sport at school, get injured and show up the next day in bandages and sometimes crutches - I still have those crutches today! Little did we know back then that it wasn’t just me being clumsy or competitive… it was a connective tissue disorder 🦓 …maybe I am a little clumsy and competitive too though 😅 I hope you’re all doing okay. This week has felt like a whirlwind and some good stuff has happened; so I know I need to reply to some messages but bear with me!🐻 But without saying anything else much, I feel the happiest I’ve been in ages 💖 And THE SUN has decided to make an appearance here in the UK ☀️ (I swear it always makes everything feel better when it’s sunny tooo) Lots of love xx #EDS #EhlersDanlos #EhlersDanlosSyndrome #hEDS #Hypermobility #ChronicIllness #Diagnosis #Pomegranate #Grapefruit
#Connectivetissuedisorder Reel by @loveandlightwellnessvt - navigating a hEDS diagnosis and feeling stuck? you might want to try another way…😵‍💫 (and no, you're not "wrong", and this shouldn't be your job in
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@loveandlightwellnessvt
navigating a hEDS diagnosis and feeling stuck? you might want to try another way…😵‍💫 (and no, you’re not “wrong”, and this shouldn’t be your job in the first place!!) as a nationally board certified health and wellness coach (who lives with hEDS and its comorbidities), my job is to help folks navigate their connective tissue disorder diagnosis and manage their care plan - and it’s easier than you think. 🤔 just like preparing for a work or school presentation, you need to prepare for you doctor’s appointment with the support of someone who knows what to look for, how to present it, and what to say🕵🏼‍♀️👀 let me help you!! comment “success” for a free 15-minute consultation!! if you’re curious, my website and email are linked in my bio. 💛💌 #chronicillness #hypermobileehlersdanlossyndrome #mcas #pots #fyp
#Connectivetissuedisorder Reel by @hypermobilitymd (verified account) - More accurate connective tissue disorder diagnoses. Shorter diagnostic odysseys. Real care after diagnosis. The Road to 2026 could reshape all of it.
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@hypermobilitymd
More accurate connective tissue disorder diagnoses. Shorter diagnostic odysseys. Real care after diagnosis. The Road to 2026 could reshape all of it. On today’s episode of @bendy_bodies, I sit down with @lara.bloom, CEO of @ehlers.danlos, to discuss The Road to 2026 and the changes that are beginning to take shape in our community. Lara speaks not only as a leader, but as someone living with hypermobile Ehlers Danlos Syndrome herself. She shares the very real anxieties and hopes that come with this next chapter, both personally and professionally, as The Ehlers-Danlos Society prepares to guide the global community through what may become a major shift in understanding. Early findings suggest that hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) are not as different as once thought and may actually represent one spectrum, one condition. This opens up essential questions. How will this be classified? Will comorbidities be considered? How can publication of this work improve diagnostic odysseys, shorten the time to diagnosis, and move us closer to models of care that provide management and support from the moment someone receives a diagnosis? That is not the reality right now for most people around the world. But The Road to 2026 offers an opportunity to change that. Sometimes progress requires reexamining long held frameworks, and Lara explains why this evolution is not only expected, but necessary. 💬 Question for you: What do you hope The Road to 2026 will mean for diagnosis or care in your part of the world? #BendyBodies #DrLindaBluestein #EDS #HSD #Hypermobility #Dysautonomia #MCAS #ConnectiveTissueDisorders 📌 Medical Advice Disclaimer: This content is for educational purposes only and is not medical advice. Always consult your healthcare provider for personalized care. VD: A video taken from the Bendy Bodies Podcast featuring host Dr. Linda Bluestein talking with Lara Bloom, CEO of The Ehlers Danlos Society, recorded from her home office.
#Connectivetissuedisorder Reel by @restorative_myo - Spinal CSF leaks and POTS (postural orthostatic tachycardia syndrome) can look very similar, which can make diagnosis challenging. The brain and spin
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@restorative_myo
Spinal CSF leaks and POTS (postural orthostatic tachycardia syndrome) can look very similar, which can make diagnosis challenging. The brain and spinal cord are surrounded by cerebrospinal fluid (CSF), which cushions the nervous system. This fluid is held inside the dura — a connective tissue membrane around the brain and spine. In connective tissue disorders like Ehlers-Danlos syndrome, the dura can be more fragile, increasing the risk of spinal CSF leaks. When CSF leaks, the brain loses some of its cushioning. Symptoms often worsen the longer someone is upright and improve when lying flat. Symptoms can include: • headaches worse when upright • tachycardia • neck or shoulder pain • pain at the base of the skull • nausea or dizziness • sensitivity to light and sound • brain fog or cognitive issues • tinnitus (ringing in the ears) Spinal CSF leaks can be debilitating, but treatment does exist — which is why awareness and screening matter. Risk factors include epidurals or lumbar punctures, spine surgery, trauma or whiplash, falls, and connective tissue disorders like Ehlers-Danlos syndrome. This is something I’m currently navigating myself. Imaging shows indications of a spinal CSF leak confirmed by my neurologist, and I’m waiting evaluation and next steps from a specialist clinic here in Colorado. For me, several risk factors fit the picture — including years of snowboarding falls and spinal injuries, epidurals during labor, and an underlying connective tissue disorder. Over the past several months I’ve developed worsening neurological symptoms, and my days look very different right now. I’m spending much more time lying flat while we work toward answers and treatment. For now, I’m stepping back from taking on new patients and creating airway content while I focus on my health and recovery. Thank you for the support. I’ll share updates when I can. I might be bendy… but I’m not broken beyond repair 😉 🩷Hayley #csfleak #eds #ehlersdanlossyndrome

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