The Ehlers-Danlos Society
@TheEDSociety
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The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
Joined June 2009
Important Update: Our X Account Has Closed. As part of our ongoing efforts to focus our resources where they can make the greatest impact, The Ehlers-Danlos Society has decided to close our X account. Our mission to support, educate, and empower the EDS and HSD community remains
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October is Dysautonomia Awareness Month. Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system...Many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) also have a type of
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📢New Research Identifies Potential Biomarkers for Diagnosing Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD)! . 🩸A recent study funded by The Ehlers-Danlos Society, and published in the American Journal of Medical Genetics, has identified
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Yesterday @Sia tweeted about having #EhlersDanlosSyndrome. Whilst awareness of those in the public eye speaking out about EDS is very welcome, we’d like to address some inaccuracies . @BBCNews @DailyMail.
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Hypermobility Movement Therapist, @jdibon has decided to gift her online #hypermobility movement program for the next 3 months. The program will now be free of charge. #EhlersDanlos #hypermobilityspectrumdisorder #COVID19.
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The Ehlers-Danlos Society is delighted to welcome @XRPHealthcare as a Sponsor for the 2024 Global Learning Conference taking place in Philadelphia, PA, USA, and virtually worldwide from July 17-21! . At XRP Healthcare, we believe that everyone deserves access to affordable
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People who have a type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) may also experience other co-occurring problems such as:. - Headaches.- Gastrointestinal problems.- Autonomic dysfunction.- Mast cell activation disorders.- Anxiety disorders. These
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May is Ehlers-Danlos Syndromes Awareness Month. What are the Ehlers-Danlos syndromes (EDS)?..The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that vary in how they affect the body and their genetic causes. 🧬..Variants in the
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🧡The Ehlers-Danlos Society billboard campaign on the Nasdaq billboard is now live in Times Square, New York, USA!. The 15-second awareness video will be shown four times per hour across seven days. This is incredible for awareness and we have the opportunity to reach so many
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Today is the start of Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month!✨. Where in the world are you celebrating EDS & HSD May Awareness Month? 🦓. #MyEDSChallenge #MyHSDChallenge #TogetherWeDazzle #ZebraStrong
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October is #DysautonomiaAwarenessMonth. Today we are looking at some of the known causes of autonomic dysfunction, and how it is investigated. [THREAD]
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September is World Pain Awareness Month. Pain is one of the most common struggles for people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). EDS and HSD can cause both acute and chronic pain. ⚡Acute pain occurs suddenly and is usually
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Dysautonomia can cause fatigue in #EhlersDanlosSyndromes and #HypermobilitySpectrumDisorders. #Dysautonomia is a group of disorders that affect the autonomic nervous system. Many people with EDS or HSD also have a type of dysautonomia, such as postural orthostatic tachycardia
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💜Today is Postural Orthostatic Tachycardia Syndrome (POTS) Awareness Day. ..Living with a type of #EhlersDanlossyndrome (EDS) or hypermobility spectrum disorder (HSD) is full of challenges on its own, but EDS and HSD often present alongside other diagnoses such as POTS.
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The average time to diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) is 10-12 years: for some, it can take decades. Too many in our community report that they are forced to travel far and wide to access a physician who knows how to manage
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Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system. Many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) also have a type of dysautonomia. There are different types of dysautonomia
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Many people with a type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) experience issues with: . Sleep initiation (falling asleep) .Sleep maintenance (staying asleep) .Sleep restoration (getting refreshing sleep) . Learn more:
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"In #hypermobileEDS, pain usually starts early in life & can be acute & localised, or it is described as "growing pains." As the person grows older, gradually pain can become widespread & persistent. Other symptoms and chronic fatigue can develop." ~ Prof. Malfait #EDSECHOSummit.
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Hypermobile Ehlers-Danlos syndrome (hEDS) is a connective tissue disorder whose genetic cause has been difficult to identify. Researchers at the Norris Lab conducted a study looking for genetic links to hEDS by sequencing the DNA of families and individuals with hEDS. They
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A HUGE thank you to @Livvherzoff for sharing her story @GreysABC & making last night's episode possible! #ehlersdanlossyndrome #GreysAnatomy
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The Ehlers-Danlos Society was proud to present @JameelaJamil with the Patient Advocate of The Year award tonight, at our Global Learning Conference in Nashville! #EDSNASHVILLE2019 #EhlersDanlosSyndrome #hypermobilityspectrumdisorders
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"88% of people in one study on the hypermobility spectrum, experienced inadequate pain prevention with local anesthesia at the dentist or in other settings, while only 33% of non-HSD or EDS patients experienced inadequate pain prevention. 1/3.
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Ehlers-Danlos Society Receives Transformational $1million Gift to Accelerate Genomic Research into Hypermobile EDS.
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Dr. Brad Tinkle just announced that we finally have new ICD-10 codes in EDS. Please see the slide below, we now have specific codes for classical, hypermobile, vascular, Ehlers-Danlos syndrome unspecified, and other Ehlers-Danlos syndromes. #EDSNASHVILLE2019
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The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. The current classification includes 13 types of Ehlers-Danlos syndrome. Each type has its own genetic causes. This
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The Ehlers-Danlos Society is deeply saddened to hear of the passing of Professor Peter Beighton, a renowned British geneticist. Professor Beighton’s contributions to the medical field are extensive:
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Thank you @DrAmirKhanGP for shining a light on the Ehlers-Danlos syndromes. Learn more about this group of 13 heritable connective tissue disorders here: #MedEd #MedTwitter #EhlersDanlosSyndrome.
A short video on a condition that isn’t talked about much : Ehlers Danlos Syndrome . Hope it’s useful x
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"The doctor couldn’t believe how hypermobile I was and told me I would 'have arthritis at an early age.' He seemed only focused on my joints, which unfortunately seemed to be a common misconception for doctors at the time—there’s so much more to #EDS than joints.
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May is Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month! Get involved: . #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #MyEDSChallenge #MyHSDChallenge #NEISvoid
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"When a patient with EDS or HSD reports pain, even if it appears out of proportion to physical findings, they should be listened to and believed." . Pain: Yes, #EhlersDanlosSyndrome and #HypermobilitySpectrumDisorder CAN cause significant pain! [A Thread]
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Not every health condition is visible. .Not every disability is visible. .Not all pain is visible. .Not all symptoms we suffer are visible. ..This week is #InvisibleDisabilitiesWeek [THREAD[
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🌟Join us in celebrating #RareDiseaseDay on the rarest day of the year! ..🦓Today, February 29th is a day to raise awareness, foster understanding, and celebrate our zebra strong community. ..🌍Wherever you are in the world, join the conversation! Comment below and tell us
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Although there are currently no specific treatments for #EhlersDanlosSyndrome, there are ways to manage its symptoms. “It is a huge disservice to patients when they’re not receiving that management and care, as even the simple validation of being believed goes such a long way and.
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The HSD Spectrum. #Hypermobilityspectrumdisorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems such as fatigue, headaches, GI problems, and autonomic dysfunction are often seen as part of HSD...A spectrum
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People who have a type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) may also experience other co-occurring problems such as:. 🔵Headaches.🔵Gastrointestinal problems.🔵Autonomic dysfunction.🔵Mast cell activation disorders .🔵Anxiety disorders. These
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Problems for rare disease patients: lack of scientific knowledge, diagnosis delays, difficulties accessing quality care. #RareDiseaseDay.
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'Point to your pain.' @FreddieCopson_ explains their chronic pain through artwork. ."Recently my Dad asked me what EDS ‘feels like' and I had no idea how to put it into words, so I decided to draw it instead! (Thread)
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Singer @halsey shared yesterday about symptoms and challenges they have been facing after recent diagnoses of #EhlersDanlosSyndrome (EDS), #MastCellActivationSyndrome (MCAS), and postural orthostatic tachycardia syndrome (#POTS).
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“I think it’s important for people to realize that #EhlersDanlosSyndrome (#EDS) is way more than just being bendy and having stretchy skin. EDS comes with a lot of comorbidities. Mine have impacted my life just as much as EDS itself.” @nypost.
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Today is Postural Orthostatic Tachycardia Syndrome #POTSAwarenessDay. The community shared stories of unrelenting fatigue and debilitating brain fog. We heard about weakness, racing hearts, and frustration.
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Tomorrow is #RareDiseaseDay! How will you #ShowYourRare?. Larry Constant Jr. lives with one of the most rare types of EDS: kyphoscoliotic Ehlers-Danlos syndrome (kEDS). Thanks for sharing your story with us, Larry!.
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Slipping Rib Syndrome (SRS) occurs when one or more of the lower ribs (commonly the 8th, 9th, or 10th) move abnormally due to the loss of the flexible cartilage connections between the ribs. This instability often irritates intercostal nerves, causing sharp, radiating pain in
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Medical students have been taught for decades that “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis...People with rare and chronic conditions spend years searching for
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Be kind, always. You never know someone's story just by looking at them. ..#EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #ChronicIllness
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The Ehlers-Danlos Society is excited to announce a new hypermobile Ehlers-Danlos syndrome (hEDS) research study that aims to identify targeted therapies and better management strategies for people with hEDS and upper gastrointestinal concerns.
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“It’s just growing pains”. “All teenagers are tired, so why are you complaining?”. “You’re just nervous. Everyone’s stomach hurts when they’re nervous!”. “Toughen up sweetie — big girls don’t cry!”. @TheMightySite #ehlersdanlossyndrome #HSD.
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"Now, four years since my #hEDS diagnosis, I have successfully eased off both my feeding tubes and central line. I am a freshman at the University of Michigan, pursuing a degree in biochemistry with the aspiration to pursue a career in genetic research." - Megan
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WOW! Around 150 news outlets have posted our latest news release on their websites, spreading #EDSawareness all around the world! .
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Thank you @billieeilish for sharing some of your journey and experiences living with #Hypermobility and subsequent injuries. @skynews #HypermobilitySpectrumDisorder #HSD.
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‘We’d never heard of #EDS before we found him, we just knew that he needed a loving home and we have so much love to give.’.@MetroUK #EhlersDanlosSyndrome #catsoftwitter.
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"They called me a hypochondriac and they called me lazy and they sent me on my way. The worst thing is that I believed them.". Read Claire's #myEDS story at #myEDSjourney.
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"Patients struggle when they have gone from physician to physician, without answers, without being validated. Recognizing the diagnosis is the first step." ~ Dr. Clair Francomano #EDSECHOSummit #TimetoDiagnosis.
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"EDS is the illness forgotten by the medical profession. #EDS patients are particularly informed about their illness, and this can sometimes lead to hostility." Professor Rodney Grahame #EDSNASHVILLE2019
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💜Today is Postural Orthostatic Tachycardia Syndrome (POTS) Awareness Day. Living with an #EhlersDanlosSyndrome #hypermobilityspectrumdisorder is full of challenges on its own, but often present alongside other diagnoses such as #POTS .
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Today is International #DayoftheZebra. On this day, we celebrate our own zebra dazzle: individuals living with #EhlersDanlossyndromes (EDS) and #hypermobilityspectrumdisorders (HSD) Learn more about why the zebra!
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"Even though a patient might be hypermobile all over their body, they may still have a tight Achilles' tendon, - different types of collagen & tissue tendons might be relatively tight or the muscles surrounding it might be doing extra duty to try to protect hypermobile joints.
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The EDS Spectrum. ..The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of #EDS is associated with different symptoms and characteristics. ..Some
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Dysautonomia, also known as autonomic dysfunction, is a group of disorders that affect the autonomic nervous system (ANS). Many people with #EhlersDanlossyndrome or #hypermobilityspectrumdisorder also have a type of #dysautonomia: #WeGotDys
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The Ehlers-Danlos Society is delighted to announce the appointment of Dr. Alan Hakim as its first Director of Education! .
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How long did it take for you to receive a diagnosis of EDS or HSD? If you are still on your journey to diagnosis, how long has this been? #myEDSchallenge #myhsdchallenge
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April is #AutismAcceptanceMonth. Studies show that people with joint hypermobility, Ehlers-Danlos syndromes (EDS), and hypermobility spectrum disorder (HSD) have a higher likelihood of being autistic than would be expected by chance. Research @BSMSMedSchool, led by Dr. Jessica
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Reasons exercise for zebras may be challenging.• Pain due to hypermobility (50%).• Dysautonomia symptoms (50%).• Postural symptoms, fatigue, exercise intolerance.• Exercise intolerance is reported in 78% of people with HSD/hEDS and POTS.Dr. Russek - #GLC2022 .1/2.
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MAY IS EHLERS-DANLOS AWARENESS MONTH!. Spring is a time of renewal and renewed hope. This year, we seek to strengthen our connections. What are YOU doing this May? Check out our activities and ideas here: #FragileButUnbreakable
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The Ehlers-Danlos Society is delighted to announce it has received a $6.7 million funding commitment from the Mike and Sofia Segal Family Foundation to advance its groundbreaking #research initiatives: #EhlersDanlosSyndrome #TogetherWeDazzle
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Today marks the start of Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month 2021! Find out how to get involved here: #MyHSDchallenge #MyEDSChallenge #EhlersDanlosSyndrome #hypermobilityspectrumdisorder
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🧬Exciting HEDGE Study Update! . Hypermobile Ehlers-Danlos syndrome (hEDS) remains the only type of Ehlers-Danlos syndrome (EDS) that does not have known genetic markers and diagnosis cannot be confirmed through genetic testing. Many people with hEDS, therefore experience delays
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"I cried in the doctor's office, not because I learned that I had an illness without a cure, a genetic disease, that I will have to deal with my all life. No no, I cried because I wasn't crazy. It wasn't in my head!". Read Camille's #myEDS story at
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There is a big overlap between postural orthostatic tachycardia syndrome (#POTS), generalized #hypermobility, and gastrointestinal symptoms. Some gastrointestinal symptoms are manifestations of orthostatic intolerance. Orthostatic intolerance refers to symptoms that occur due to
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What lies beneath. ..Not every condition is visible. ..Not every disability is visible. ..Please, treat everyone with kindness; anyone you meet may be struggling with an invisible illness. ..#MyEDSChallenge #MyHSDChallenge #NEISVoid
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Debilitating, chronic fatigue is common in people with hypermobility spectrum disorder (HSD) and Ehlers-Danlos syndrome (EDS). To tackle fatigue, it is important to recognize the role of persistent inflammation from conditions common with HSD or EDS, including mast cell.
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We're excited to collaborate with @DrHenSays for EDS & HSD Awareness Month! Ehlers-Danlos syndromes are a group of 13 hereditary disorders that affect connective tissues. [Thread]
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Hypermobile Ehlers-Danlos syndrome is a heritable connective tissue disorder that causes generalized #jointhypermobility, joint instability, & #chronicpain, & is associated with a variety of other symptoms & related conditions that affect many different areas of the body.
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The Ehlers-Danlos Society is excited to announce the start of recruitment for participants in the Hypermobile Ehlers-Danlos Syndrome Genetic Research Study, devoted to finding the underlying genetic markers for #hypermobile #EDS. #EhlersDanlosSyndrome
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Despite challenging symptoms, Ehlers-Danlos syndromes and hypermobility spectrum disorders can often be invisible conditions, with a multitude of issues often going on inside. ..You never know what someone is going through. #InvisibleDisabilitiesWeek #InvisibleIllness
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On average, patients wait 4 to 7 years to receive a diagnosis for a rare disease. #RareDiseaseDay #EDSRareDiseaseDay.
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𝗘𝗾𝘂𝗶𝘁𝘆 𝗳𝗼𝗿 𝗔𝗹𝗹 #𝗥𝗮𝗿𝗲𝗗𝗶𝘀𝗲𝗮𝘀𝗲𝗗𝗮𝘆..We're raising our hands for Rare Disease Day! Today is a day to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. #RareDiseaseDay
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Today is International Day of Persons with Disabilities! Disabilities occur in many forms. They can be visible and non-visible. ..Some people will experience a disability that is visible to others. Some disabilities have no visible signs. Many people will experience both.
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When you hear hoofbeats, think Broncos in zebra stripes!.We can't thank Brendan Langley @_1smoove and @BroncosOffField enough for spreading much-needed awareness through the #MyCauseMyCleats campaign. We love your #ZebraStrong cleats!.
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"In people with #EDS & #HSD, most #neuropathies are sensory, typically cause symptoms like numbness, or feeling things you shouldn't tingling, prickling, stinging, pain, burning, electrical, zinging, hyper scent, feeling things that aren't there." Dr. Saperstein #Neurology2021.
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"Overdoing it is not a strategy for managing a chronic condition, it leads to pain, stress, and fatigue. We need to find a window of tolerance and pace, building up strength and helping the body to build up a level of tolerance to an activity." Dr. Shepherd, #PainManagement2021.
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The Ehlers-Danlos Society is delighted to announce a gift of $1 million US dollars to advance #research within the #EhlersDanlossyndromes (EDS), #hypermobilityspectrumdisorders (HSD), and associated symptoms and conditions
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Today is International #DayoftheZebra! We celebrate our own zebra dazzle: individuals living with a type of #EhlersDanlosSyndrome (EDS) and #HypermobilitySpectrumDisorder (HSD). Use our Facebook profile frame, share this video, and find more ways to get involved and raise
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The Ehlers-Danlos Society is delighted to announce we have received a donation of $260,000 to advance research for those living with #EhlersDanlosSyndrome and #HypermobilitySpectrumDisorder!
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We can't begin to thank every single advocate, researcher, donor, doctor, patient, group, or supporter for being a part of our revolution! We are #ZebraStrong!.
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Big news! There are now 14 distinct types of Ehlers-Danlos syndromes!.We are incredibly grateful to the hard-working researchers on this project for this important discovery! .
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"There are less than 10 papers in the world on throat problems in Ehlers-Danlos syndrome, and 1-5 patient cases. We need more research, to understand this scientifically. Choking is the commonest symptom I see in my clinic." Prof. Birchall #EDSVirtual2020.
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Tori Foles, wife of Philadelphia Eagles quarterback Nick Foles, raises awareness for dysautonomia after POTS diagnosis.
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We are delighted to announce a $2.375 million pledge from InVitro Cell Research, LLC (ICR) for research in hypermobile Ehlers-Danlos syndrome (hEDS). ICR is a privately funded regenerative medicine research company that is funding proteomics and metabolomics research in hEDS.
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"People with #hypermobility have decreased body awareness and they may not realize they're breathing incorrectly or might not know what correct is.
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✨ The Ehlers-Danlos Society’s App is Now Live!. Whether you have an Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD), or are a healthcare provider, our app is designed with YOU in mind. 🌍 Get access to symptom tracking, medication summaries, educational
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"Pain is a very common complaint both in Ehlers-Danlos syndromes, virtually all types, and in the hypermobility spectrum disorders, and the intensity and severity of this pain can be as severe in EDS or in HSD." Prof. Malfait, #PainManagement2021.
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We want early diagnosis, good management, respect & recognition for #EhlersDanlos patients. #ItsOurTime
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🚨 Research Grant Announcement! 🚨. The Ehlers-Danlos Society is excited to announce its Skin Biomarker Grant Round, which aims to advance the identification of biomarkers in hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). This
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As if having EDS/HSD isn’t enough, many of us have other comorbid conditions to manage as well. This often means juggling multiple specialists and complex coordination of care. #EhlersDanlos #EDS #HSD #hypermobilityspectrumdisorders.
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Not all stripes are black and white 🌈🦓. The Ehlers-Danlos Society recognizes and celebrates Pride Month this June with the LGBTQIA+ members of our dazzle! 🏳️🌈. Our Let’s Chat: LGBTQIA+ group is for LGBTQIA+ community members who have been diagnosed with, or suspect they may
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NOT ALL STRIPES ARE BLACK AND WHITE.The Ehlers-Danlos Society recognizes and celebrates Pride month with the LGBTQ+ members of our dazzle.
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'People assume EDS only affects my joints, but it affects every aspect of my life' - Amy. "Before being diagnosed, I had never heard of EDS. Now I hope to spread awareness about it."
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