Latest posts tagged with #veds on Bluesky
"What is Ehlers-Danlos Syndrome, and what is up with the Zebras?" Give our post, Ehlers-Danlos Syndrome & the Zebras, a read to find out. Don't worry, it is short & sweet: Some "quick facts." 😉💙🦓💙
linktr.ee/thezebralliance
#ehlersdanlossyndrome #blog #ehlersdanlos #EDS #hEDS #vEDS #cEDS
This is the Marfan Foundation, a resource for folks with genetic vascular conditions (especially Marfan syndrome)
#MarfanSyndrome #EDS #vEDS #ChronicIllness #Resources
#KnowledgeIsPower #Community 💕 #Wellness
This is a useful seminar for anyone with #vEDS, Marfan syndrome, Stickler, or other genetic vascular condition. I'll share the link to the Marfan Foundation in the reply, & the shortened link here is for the free seminar:
tinyurl.com/5nzmt55v
#EDS #ChronicIllness #MarfanSyndrome 💕 #Wellness
Arterial Fragility is a real thing: vEDS is the subtype more likely to suffer from arterial rupture, but it can happen to any subtype due to collagen abnormalities. EDS is FAR more than being bendy 🩵🦓🩵
#ehlersdanlossyndrome #ehlersdanlos #EDS #vEDS #chronicillness #raredisease
#VascularEhlersDanlossyndrome (vEDS) is a heritable connective tissue disorder that makes the connective tissue very fragile, particularly in the blood vessels and hollow organs.
youtu.be/hL2uWv1z7vc?... #Healthcare #HealthProfessionals #Vascular #vEDS
#sponsored #ClinicalResearch #RareDisease #vEDS #VascularEDS #VascularEhlersDanlosSyndrome #ISS2025 #EhlersDanlosSyndrome
AI facial analysis accurately detects vEDS with as few as 13 training images, offering a low-cost tool to aid early diagnosis and management in resource-limited settings. bit.ly/43iciuA #GIMO #vEDS #FacialPhenotypeAnalysis #MachineLearning #AIBasedScreening #LIME
Verkürzte Lebenserwartung besteht.
So sind sie auf besonders viel Rückhalt und Awareness angewiesen
Der #Punktehund und ich schicken daher allen #vEDS Betroffenen heute liebe Grüße 🌞.
#myEDSChallenge #hEDS #EhlersDanlosSyndrome #ZebraStrong #SelteneErkrankung #rareDisease #seltenSindViele
Gefäßsystem betroffen.
Dies kann dazu führen, dass Gefäße oder sogar das Gewebe eines Organs einfach
-ohne eine Verletzung oder Trauma- reißt und so schwere bis lebensbedrohliche Probleme auslöst.
Dadurch ist #vEDS leider der #EDS unrertyp, bei dem.die schlechteste Prognose und häufiger auch eine
Der #Punktehund übernimmt das heutige #Reds4VEDS im #EhlersDanlosSyndrom Awareness-monat für mich 😊
Vielleicht schafft er es, ein wenig aufmerksam für die Betroffenen des vaskulären Untertyps des EhlersDanlosSyndrom zu machen.
Bei #vEDS sind leider die Kollagenfasern von inneren Organen und dem
What is vEDS? vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax.
Day 16 – Wear Red 4 vEDS ❤️
"Global REDS4VEDS Day! A day dedicated to raising awareness of vascular #EhlersDanlosSyndrome: show support for people living with #vEDS. 👉 Wear red, take a selfie, and post it on social media + #REDS4VEDS
Info: @ehlersdanlos.bsky.social
#VascularEDS #EDS #raredisease
🔴 Today is REDS4VEDS Day 2025, marking 10 years of awareness for vascular Ehlers-Danlos syndrome (vEDS).
Many are still diagnosed only after a medical emergency. We’ve created tools to support vEDS care.
Watch: youtu.be/j6XQJIicJCU?...
More info: bit.ly/4kmcvlV
#REDS4VEDS #vEDS #EDS #RareDisease
A digital drawing of a figure suspended mid-air by bright red threads. They’re holding a floating translucent heart in their hands.
It’s #REDS4VEDS Day — Please consider donating at www.reds4veds.org
vEDS patients have a decreased life expectancy and live every day with the risk of life-threatening spontaneous ruptures.
thevedsmovement.org/category/vas...
#art #chronicillness #disabilityawareness #veds #marfans #lds
❤️Help us raise awareness of vEDS today - Comment below with where in the world you're joining in from and share your photos!
Learn more about vEDS here www.ehlers-danlos.com/veds/
#vEDS #VascularEDS #Vascular #VascularEhlersDanlosSyndrome #EhlersDanlosSyndrome #MyEDSChallenge #EDSawarenessmonth
Terrible quality pic but the only one I could find showing my W-sitting. This was my sister’s and my preferred way to sit throughout our childhood. I could probably still do it if I could get down on the floor. 😂 pathways.org/what-is-w-si... #veds #medicalmystery #ehlersdanlos #ehlersdanlosawareness
Written by my mom when she was 21 yrs old. My “low” fever of 104 at 4 mo old that lasted over two months was just written off as strep and none of my 3 drs in 2 countries seemed at all concerned about my umbilical hernia over 7 months. Mom writes that I’m a “poor crawler” and cried constantly #VEDS
Living with vascular #EhlersDanlos syndrome? Join our webinar to get information on practical tools created by experts & patient representatives.
🗓️ 13 May, 17:00 CEST
👉 Register here: bit.ly/3RRmqDV
Live captions in English, French, Spanish, Italian, German, & Dutch available.
#vEDS #RareDiseases
Vascular Ehlers-Danlos syndrome ( vEDS ) is a rare type, maybe 1/100,000 and can be genetically tested looking for the COL3AI gene mutation but here are some key markers
#vEDS
🌷Another spring meeting wrapped! Today, our Medium-Sized Arteries WG met in Rotterdam advancing on key projects like
✅ Emergency flowcharts
✅ Patient registry
✅ Educational resources
✅ Delphi study
Thanks to all who joined. Stay tuned for highlights!
#ehlersdanlos #EDS #vEDS #RareDisease
Is your work connected to vascular #EhlersDanlos syndrome (vEDS)? This is the event to mark on your calendar.
🕧 12:30–17:00 CEST | 📍 Hybrid (Rotterdam or online)
🗣️Expert talks on #genetics, ARCADE trial results, #pregnancy & surgery in #vEDS.
Register here: bit.ly/vEDSsymposium
#RareDiseases
Do you know the red flags for vascular #EhlersDanlos syndrome? Our clinical pathway outlines red flags, diagnostic steps, and essential follow-up for patients with vEDS.
Learn more 👉 bit.ly/4hEn7en
#RareDiseases #vEDS #PatientPathway #vascularhealth
EDS Fact: EDS can cause complications from mildly loose joints to life-threatening conditions. For example, Vascular EDS can weaken the aorta and other arteries, which can rupture and be fatal.
Did you know...
#vEDS #EDS #raredisease #chronicillness
Image of Lumia Health ear wearable logo on a navy zebra background. Rare is beautiful, and we see you. On this Rare Disease Day, we are honored to serve those in our community living with rarer diagnoses. Through our research efforts as well as the Lumia wearable, our mission is to improve your lives and illuminate complex conditions. In particular, we honor our Members with rare genetic connective tissue diseases, rare #synucleinopathy, #rarecancers with chemo-induced #neuropathy and #autonomicdysfunction, rare congenital differences like certain vascular #compressionsyndromes, and rarer forms of #dysautonomia. #multiplesystematrophy #msa #aag #PAF #pureautonomicfailure #autoimmuneautonomicganglionopathy #marfan #vasculareds #veds #ehlersdanlossyndrome #loeysdietz #turnersyndrome #fd #dbhd #eaglesyndrome #raredisease #medicalzebra #spooniesupport #invisibleillness
Rare is beautiful, and we see you. This #RareDiseaseDay we are honored to serve those in our community with rare diagnoses. Through research as well as the Lumia wearable, our mission is to improve lives and illuminate #invisibleillness.
#dysautonomia #msa #aag #PAF #veds #marfan & more! #wearlumia
Today is RARE Disease DAY 2025!💜
EDS has 13 types—12 can be genetically tested.
But are we rare or just rarely diagnosed?
🧬Do you have a rare type like Classical (cEDS) or Vascular EDS (VEDS)?
Join the conversation: #RareDiseaseDay
#EDS #HSD #VEDS #CEDS #hEDS
A doctor wearing a white coat and a stethoscope around their neck is holding a sign with both hands. The sign reads: ‘RARE DISEASE DAY 28th Feb. 2025 …to raise awareness for rare diseases … For Ehlers-Danlos syndromes we have 12 rare named and genetically proved types. The 13th named one is hEDS and we believe not so rare but just rarely diagnosed or believed.’ Below the doctor’s hands, bold black text asks, ‘Rare? Or Rarely Diagnosed?’
RARE Disease DAY to raise awareness for rare diseases. For Ehlers-Danlos, we have 13 named types. Do you have a rare type like Classical or Vascular EDS? The 13th is hypermobility EDS (hEDS); 80-90% have it or the closely related HSD, we believe to be rare as rarely diagnosed. #EDS #HSD #vEDS #cEDS
Understanding vEDS – A severe form of EDS affecting blood vessels, organs, and skin, with life-threatening risks. Early diagnosis is vital. To learn more check out the resources at UnremarkableMe.com
#vEDS #EhlersDanlos #RareDisease
www.unremarkableme.com/post/veds-ge...
🩸 What makes varicose veins in #vEDS different?
In Vascular Ehlers-Danlos Syndrome (vEDS), fragile blood vessels mean varicose veins can rupture, leading to serious complications.
📢 Missed our webinar on this? Watch now 👉 bit.ly/4k7FeMn
#VascularEDS #EhlersDanlos #RareDisease
⏳ 3 Days to Go!
Learn why varicose veins matter in vascular Ehlers-Danlos syndrome at our webinar with Dr. Michael Frank on Feb 6.
✔ Causes.
✔ Symptoms to monitor.
✔ Safe treatments.
Register here: bit.ly/3Cm7Hwy
#RareDiseases #varicoseveins #ehlersdanlos #vEDS
Varicose veins in #vEDS? Let's talk about it!
📅 Join us on 6 Feb to:
📌Understand why varicose veins occur in vEDS.
📌Learn symptoms & safe management.
📌Get YOUR questions answered live by Dr. Michael Frank!
Register now! 👉 bit.ly/3Cm7Hwy
#VascularEDS #EhlersDanlos
That's concerning as someone with #tachycardia and a resting BPM of between 99 and 115. I have a referral to a cardiologist because, in combination with my elevated c reactive proteins, it could indicate #VascularEhlersDanlosSyndrome ( #vEDS) and put me at risk for #AorticDissection 😕
