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).
New York, USA
Joined June 2009
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🌟May is Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) Awareness Month!
💗Join the Acts of Awareness Challenge. You can help highlight EDS and HSD in many different ways:
🤳🏾Social media challenge - Use our 31 daily prompts
📸Use our May
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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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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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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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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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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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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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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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"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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A HUGE thank you to
@Livvherzoff
for sharing her story
@GreysABC
& making last night's episode possible!
#ehlersdanlossyndrome
#GreysAnatomy
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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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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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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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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 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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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 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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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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"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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🌟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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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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“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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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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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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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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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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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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“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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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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"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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"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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‘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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"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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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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"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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"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 Ehlers-Danlos Society is delighted to announce the appointment of Dr. Alan Hakim as its first Director of Education!
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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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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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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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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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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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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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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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"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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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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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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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 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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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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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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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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"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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"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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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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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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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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"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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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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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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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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"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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"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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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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Tori Foles, wife of Philadelphia Eagles quarterback Nick Foles, raises awareness for dysautonomia after POTS diagnosis.
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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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We want early diagnosis, good management, respect & recognition for
#EhlersDanlos
patients.
#ItsOurTime
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The Hypermobile Committee from the International Consortium met yesterday in NYC, to discuss and evaluate the
#hypermobile
#EDS
(hEDS) criteria and
#hypermobility
spectrum disorder (HSD).
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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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October is
#DysautonomiaAwarenessMonth
- Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The autonomic nervous system controls important functions like heart rate and blood pressure.
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◍ On average it takes 8 physicians to get a proper diagnosis.
◍ The average patient receives 2 or 3 misdiagnoses before being properly diagnosed.
◍ Only about 45% of patients have all their costs covered by insurance providers.
#RareDiseaseDay
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A splint is a support or device that is used to restrict motion in a part of the body. Ring splints help limit movement in the finger joints, which are often hypermobile in people with a type of
#EhlersDanlossyndrome
(EDS) or
#hypermobilityspectrumdisorder
(HSD).
Ring
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"Over 80% of patients with
#EDS
and
#HSD
seen at our center have headaches. It is a similar frequency for neck pain and temporomandibular joint issues." Dr. Saperstein
@complexneuro
#GLC2022
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Congratulations
@OddlyYvie
! Audience favorite Yvie Oddly took the crown at the finale of
#RuPaulsDragRace
season 11. As someone who has chosen to live publicly with
#EhlersDanlossyndrome
(EDS), her win has a special meaning for our community
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What is joint hypermobility? 🧵
Joint
#hypermobility
means that a person’s joints have a greater range of motion than is expected or usual. Some people have
#jointhypermobility
that does not cause them pain or other issues. However, some people with joint hypermobility also have
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A new research paper has been published this week that looked at the frequency and severity of
#dysphagia
,
#dysphonia
, and laryngopharyngeal
#reflux
symptoms in people with
#EhlersDanlosSyndromes
or
#hypermobilityspectrumdisorder
#MedEd
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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."
#EhlersDanlosSyndrome
#myEDS
story
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“‘Just try and don’t overextend anything. Learn to not pop joints out.'” – Stacey G.
What's the most ridiculous thing someone has ever said to you about your Ehlers-Danlos syndrome?
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"EDS is hard for some people to understand. I can be high functioning one day, and then the next day (or maybe a few days) I won’t be able to get out of bed because my symptoms are so strong. 1/2
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Today is
#PoTSAwarenessDay
#PosturalOrthostaticTachycardiaSyndrome
(
#PoTS
) is an abnormal increase in heart rate that occurs after sitting up or standing. Tachycardia may also be seen at rest, including during sleep. [Thread]
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"You can have problems if your stomach is not emptying properly or too rapidly, you can feel full very quickly and have pain, bloating, nausea and discomfort. It is important to do the right test to see if you have rapid emptying, or if you have delayed emptying."
#EDSMADRID2019
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