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ehlersdanlos.bsky.social
The Ehlers-Danlos Society
@ehlersdanlos.bsky.social
1.5K followers 84 following 160 posts
The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) ehlers-danlos.com
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · May 9
🌟 Did you know there are many types of #EhlersDanlossyndrome (EDS) and #hypermobilityspectrumdisorder (HSD), each with their own distinct signs and symptoms?
This image is a medical information graphic focusing on signs and symptoms of vEDS (Vascular Ehlers-Danlos Syndrome) and its effect on the cardiovascular system. The layout is divided into three main sections: 1. **Left Sidebar:** A vertical menu lists different body systems or areas affected by vEDS, including: - Cardiovascular (highlighted in blue) - Chest and Lungs - Gastrointestinal - Skin - Musculoskeletal - Eyes - Mouth and Throat - Feet - Pregnancy 2. **Center:** A human body diagram shows the cardiovascular system in red (arteries) and blue (veins). Major arteries are clearly illustrated, emphasizing the vascular network throughout the body. 3. **Right Panel:** Informational text under the cardiovascular section details symptoms related to the cardiovascular system: - **Arterial aneurysm** (not expanded) - **Arterial dissection** (expanded): Describes arterial dissection as a tear in the artery wall, which separates its layers, leading to potential life-threatening leakage. Specific mention is made of "aortic dissection" as a severe condition. - ⚠️ A warning note highlights that arterial dissection can be life-threatening and requires emergency medical treatment. - **Arterial rupture** and **Early onset varicose veins** are collapsed options. The overall design uses clean lines, bold headings, and color coding to emphasize the cardiovascular system, with blue and red highlighting veins and arteries.
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 11d
"Try RTHM’s new intelligence platform today." www.rthm.com
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#sponsored #POTS #MCAS #EDS #MECFS #LongCOVID #RTHM_health #ChronicIllness #pwLC #pwME #IACC
RTHM
Accessible care from RTHM
www.rthm.com
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 11d
"From prescription medications and supplements to testing and workup options, it’s designed to help you find next steps that actually fit your case.⁠
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It’s free, easy to use, and built for people with infection associated chronic conditions.⁠
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 11d
"Our new HIPAA-compliant intelligence platform connects your health history, symptoms, and the latest research to surface treatments and testing suggestions—sometimes options you may not have considered yet.
RTHM
Accessible care from RTHM
www.rthm.com
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 11d
#Ad The Ehlers-Danlos Society thanks RTHM Health for sponsoring #ISS2025! [Thread]
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"Living with Long COVID, ME/CFS, or EDS often means years of searching for answers and what to try next. Watch to hear Eliana’s experience with RTHM’s new intelligence platform and what it revealed for her.⁠
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 14d
October is #Dysautonomia Awareness Month. Many people with #EhlersDanlossyndrome (EDS) or #hypermobilityspectrumdisorder (HSD) also have a type of dysautonomia. People with #EDS & #HSD most commonly have a form of orthostatic intolerance. Learn more: www.ehlers-danlos.com/dysautonomia/ ⁠
"Infographic titled 'Common Symptoms of Dysautonomia' by The Ehlers-Danlos Society. It shows seven illustrated human figures with icons representing symptoms: tachycardia (fast heart rate), hypotension (low blood pressure), dizziness/lightheadedness, gastrointestinal dysmotility (problems moving food through the digestive system), temperature and sweating dysregulation, sleep problems, and bladder issues."
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 16d
Have you found benefits from prolotherapy? We'd love to hear your experiences. ⁠
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#painmonth #painmanagement #prolotherapy #EDS #HSD #EhlersDanlossyndrome #Hypermobilityspectrumdisorder
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 16d
Prolotherapy is not a cure, but it can help some individuals as part of a wider pain management plan.⁠
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Click to watch Dr. Fraser Burling explore the role of prolotherapy from our 2024 Global Learning Conference.⁠
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 16d
Treatment usually involves several sessions over a few months. Some people notice less pain and fewer joint problems, while others may not see much change. Side effects are usually mild (soreness or swelling), but serious complications are rare.⁠
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 16d
For people with EDS or HSD, joints can be overly flexible and unstable, which can cause pain, repeated injuries, or joint slipping. By helping to tighten and strengthen the connective tissues, prolotherapy may reduce pain and make joints more stable.⁠
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 16d
The goal is to stimulate the body’s natural healing response, promoting the strengthening of connective tissue to help stabilize the affected area and reduce pain.⁠
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 16d
Prolotherapy is a treatment that involves injecting an irritant solution (often sugar-based) into ligaments, tendons, or joints. [Thread] youtu.be/sigAJALk6vE?...
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Prolotherapy: Exploring Its Role - Dr. Fraser Burling - 2024 GLC
YouTube video by The Ehlers-Danlos Society
youtu.be
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 19d
#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
A Doctor’s Guide to Vascular EDS: Recognizing the Signs for Early Diagnosis
YouTube video by Doctor Clair
youtu.be
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Reposted by The Ehlers-Danlos Society
jefflubellc19.bsky.social
Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @jefflubellc19.bsky.social · 26d
Our article examining the extent to which people with #hypermobility are at risk of Long COVID was just published in BMJ Public Health, an open access journal. bmjpublichealth.bmj.com/content/3/2/...
Variant connective tissue as a risk factor for long COVID: a case-control study of data from a retrospective online survey of adults in the USA and UK
Introduction This study explored the extent to which two measures of joint hypermobility, a marker of variant connective tissue, predict the development of long COVID after COVID-19 infection, and whe...
bmjpublichealth.bmj.com
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 26d
"Exciting news! The Decentralized Study Evaluating Celiprolol on VEDS Related Events (DiSCOVER) clinical trial webpage has been re-launched. Check out the updated site for more information about the study, FAQs, and how you can participate." lnkd.in/efSZrnZB
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 26d
"Zevra Therapeutics is committed to developing treatments for rare diseases. Our phase 3 clinical research study tests celiprolol, an investigational medicine that is being evaluated to determine its efficacy in treating vascular Ehlers-Danlos syndrome (#VEDS).⁠
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 26d
#sponsored #ClinicalResearch #RareDisease #vEDS #VascularEDS #VascularEhlersDanlosSyndrome #ISS2025 #EhlersDanlosSyndrome⁠
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 26d
#Ad The Ehlers-Danlos Society is delighted to welcome Zevra Therapeutics as Sponsors of the 2025 International Scientific Symposium! ⁠
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 26d
It’s been such an encouraging day, seeing the passion of the clinicians and researchers who
are dedicated to their work within rarer types of EDS.
#ISS2025 #TogetherWeDazzle #EhlersDanlosSyndrome #VascularEDS #ClassicalEDS #KyphoscolioticEDS #Research #Genetics
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 26d
● Novel therapeutic options in vEDS
● The Molecular and Clinical Features of Kyphoscoliotic Ehlers-Danlos Syndrome
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 26d
🧬We welcome speakers from countries around the world to share the latest management and molecular updates.

Topics include:

● Development of Clinical Management and Surveillance Guidelines for Children with Classical EDS
● Obstetrical management of vEDS patients
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 26d
🌎It’s Day 2 of the 2025 International Scientific Symposium here in Toronto, Canada! Today, sessions will cover classical EDS (cEDS), vascular EDS (vEDS), and research into rarer types of EDS.
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 27d
New research into #hypermobileEDS! www.ehlers-danlos.com/exciting-new...
Exciting New Research Sheds Light on hEDS Biology - The Ehlers Danlos Society
We are excited to share a new paper published yesterday: Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology by Griggs M, Gensemer C, et al. (Immun...
www.ehlers-danlos.com
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 28d
"Learn more at bodybraid.com or visit us at the Symposium if attending in person!"

#sponsoredpost #PostureSupport #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 28d
"The Braid’s soft, elastic fabric bands spiral around the body, engaging the core and gently aligning different body parts into an integrated whole.
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ehlersdanlos.bsky.social
The Ehlers-Danlos Society @ehlersdanlos.bsky.social · 28d
"The Body Braid is excited to support the 2025 International Scientific Symposium as a Premium Sponsor.
The Body Braid is a posture support that acts as external connective tissue, which helps to reinforce the body’s internal connective tissue.
Body Braid - Versatile Posture Support Body Braid System
Promote better posture and movement with the Body Braid System. This adjustable posture strap enhances your mind-body connection for healthy, joyful movement.
bodybraid.com
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