The Ehlers-Danlos Society
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The Ehlers-Danlos Society
@ehlersdanlos.bsky.social
1.5K followers 84 following 170 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
🧠💗Today is the EDS ECHO Summit: Mental Health virtual event!

🌎We are joined by 431 attendees, including 228 healthcare professionals, representing 25 countries [Thread]
EDS ECHO Summit on Mental Health recordings. Virtual conference for community members and healthcare professionals. Includes Ehlers-Danlos Society ECHO and Project ECHO logos.
November 1, 2025 at 1:23 PM
ehlersdanlos.bsky.social
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"Each splint we create at Splints by Evabelle is more than jewelry, it’s comfort, strength, and self-expression for people living with #EhlersDanlosSyndrome and joint #hypermobility.⁠

Partnering with clinicians, OTs, and EDS communities worldwide.⁠
October 21, 2025 at 3:20 PM
ehlersdanlos.bsky.social
#Ad The Ehlers-Danlos Society is delighted to welcome Splints By Evabelle as Sponsors of the EDS ECHO Summit: Mental Health, happening on November 1! ⁠
October 21, 2025 at 3:20 PM
ehlersdanlos.bsky.social
#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.⁠
October 3, 2025 at 3:17 PM
ehlersdanlos.bsky.social
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."
October 1, 2025 at 1:47 PM
ehlersdanlos.bsky.social
#Ad The Ehlers-Danlos Society is delighted to welcome Zevra Therapeutics as Sponsors of the 2025 International Scientific Symposium! ⁠
September 18, 2025 at 8:13 PM
ehlersdanlos.bsky.social
🌎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.
September 18, 2025 at 8:11 PM
ehlersdanlos.bsky.social
#Ad The Ehlers-Danlos Society is delighted to welcome Body Braid as Sponsors of the 2025 International Scientific Symposium, September 17-21! ⁠[Thread]
September 16, 2025 at 8:37 PM
ehlersdanlos.bsky.social
"Patients can log daily symptoms, nutrition, and wearable data, while Guava organizes it into clear trends and insights. Providers get a more complete view of how their patients are doing between appointments, making it easier to spot patterns, measure progress, and guide care.⁠
Screenshot of the Guava app showing customizable daily check-in reminders. Users can snooze reminders or log symptoms such as fatigue, joint pain, food, energy, and activity. Text highlights that reminders help boost consistency and reveal symptom patterns. Analytics view from Guava displaying a bar chart linking joint pain with caffeine consumption and cards showing correlations like laxity with higher heart rate variability and tachycardia with Ivabradine 7.5 mg. Caption notes that Guava surfaces statistically significant patterns to guide care decisions.
September 16, 2025 at 7:16 PM
ehlersdanlos.bsky.social
"For people with #EDS and #POTS, tracking symptoms and progress can feel overwhelming, and for providers, it can be hard to see the full picture in a short visit. Guava helps bridge that gap.⁠
Guava symptom logging interface with a body map highlighting joint pain locations and an entry form for severity, date, and time. Text states patients can record EDS and POTS symptoms such as joint instability, GI issues, brain fog, and tachycardia, with voice or photo input. Guava food logging screen showing a photo of avocado toast with tomato, ingredient tags like gluten and high protein, and nutrient breakdown charts over several days. Description highlights AI-powered meal recognition and optional nutrient estimation.
September 16, 2025 at 7:16 PM
ehlersdanlos.bsky.social
#Ad The Ehlers-Danlos Society is delighted to welcome Guava Health as Sponsors of the 2025 International Scientific Symposium, September 17-21! ⁠[Thread]
Cover page with teal background and bold title: “How to Use Guava to Track Patient Progress – EDS, POTS, and beyond — one place for patients and providers.” Serves as the introduction to a guide for tracking patient health data. Guava dashboard summarizing key metrics—sleep, HRV, hip pain, mood, blood oxygen, physical activity, walking, and heart rate—across weekly date ranges with trend lines. Description emphasizes a unified view of activity, nutrition, lab results, and wearable metrics. Line graph from Guava integrating wearable device data such as sleep, daily steps, resting heart rate, and heart rate variability over time. Text explains support for Apple Health, Google Fit, Garmin, Oura, and more to track key activity and health metrics.
September 16, 2025 at 7:16 PM
ehlersdanlos.bsky.social
"Now available for general purchase - we take HSA/FSA!"
Learn more at lumiahealth.com

#Sponsored #POTS #Dysautonomia #EhlersDanlosSyndrome #Hypermobility #HypermobilitySpectrumDisorder #EDS #HSD #Lumia #BrainFog #Syncope #ISS2025
Three Lumia ear cuff devices in gold, rose gold, and silver next to a charging case. An inset shows the device worn on the ear. Text reads: “Experience Lumia Today. Available Now at lumiahealth.com. HSA/FSA We take HSA/FSA Cards! Now wear it your way!”
September 12, 2025 at 3:11 PM
ehlersdanlos.bsky.social
"Designed for people living with POTS, Syncope, Orthostatic Hypotension, and other forms of Dysautonomia, Lumia is the product of years of cutting-edge research to help you learn how to feel better!
Person stretching outdoors in athletic clothing, wearing the Lumia ear device. A graph labeled “Compression” shows an increase from 40 to 70. Text reads: “Find Compression That Works For You. Compression wear fits every body differently. Lumia helps you see which pieces support your Flow most, so you can do more of what’s actually helping.”
September 12, 2025 at 3:11 PM
ehlersdanlos.bsky.social
"Lumia is the first wearable that tracks drops in blood flow to the head - going beyond heart rate to show you what really matters for chronic symptoms like lightheadedness, dizziness, brain fog, and fainting.
Smiling person walking outdoors holding a coffee cup while wearing the Lumia ear device. A graph labeled “Dessert” shows values dropping from 70 to 40. Text reads: “Let Your Meals Lift Your Flow, Not Weigh It Down. Food is deeply personal. Lumia helps you see how food choices affect your Flow, helping you fuel and hydrate smarter.”
September 12, 2025 at 3:11 PM
ehlersdanlos.bsky.social
#Ad The Ehlers-Danlos Society is delighted to welcome @wearlumia.bsky.social as Sponsors of the 2025 International Scientific Symposium, September 17-21! [Thread]
Close-up of a person wearing a small metallic ear cuff device on the upper ear. Text reads: “LUMIA. Your Body Is a Story That Deserves to Be Seen. Meet the First Wearable That Tracks Blood Flow to Your Head. See What You Feel, Finally.” Person lying on a bed with legs raised against the wall while holding a phone. A small graph labeled “Leg Raise” shows an increase in values from 40 to 70. Text reads: “Every Position Tells a Different Story. The way you sit or lie down can change how much blood reaches your head. Lumia helps you see these shifts, so you can better understand how to support your Flow.”
September 12, 2025 at 3:11 PM
ehlersdanlos.bsky.social
Less than 1 week to go until the 2025 International Scientific Symposium! An event for health professionals to hear the latest research in EDS and HSD, & September 21 will welcome the community and caregivers. Join us in #Toronto, Canada, or virtually worldwide: www.ehlers-danlos.com/events/inter...
Promotional banner for The Ehlers-Danlos Society 2025 International Scientific Symposium. Text reads: “PATHWAYS TO PROGRESS: A Decade of Insights and Innovations in EDS & HSD. 1 WEEK TO GO.” Event details: September 17–21, 2025, 9 AM–6 PM EDT, Toronto, Canada, and virtually worldwide. Background images show people viewing scientific posters and attending a conference, with a Canadian flag in the top right corner.
September 12, 2025 at 2:49 PM
ehlersdanlos.bsky.social
"Starting at $49 + the cost of medication, this is an ideal solution for patients seeking safe, accessible treatments from home, without waiting for appointments.⁠
Pyridostigmine for POTS Pyridostigmine improves symptoms of POTS by enhancing nerve-to-muscle communication and autonomic nervous system tone in ways that stabilize heart rate and blood pressure with standing. Pyridostigmine Study A study from Toledo Medical Center found that 43% of POTS patients experienced significant improvements in orthostatic symptoms, namely "fatigue (55%), palpitations (60%), presyncope (60%), and syncope (48%)” while taking pyridostigmine. https://doi.org/10.1111/j.1540-8159.2011.03047.x RTHM Direct offers these treatments While they are not cures, these treatments can improve the debilitating symptoms POTS, MCAS and EDS. Access these and other medications at direct.rthm.com
September 9, 2025 at 3:11 PM
ehlersdanlos.bsky.social
"Discover RTHM Direct, a digital health platform that gives you access to affordable research-backed treatments for infection associated chronic conditions like Long COVID, ME/CFS, POTS, MCAS, and more, in as little as one business day.⁠
2. Ketotifen for MCAS Ketotifen is often helpful for managing MCAS by stabilizing mast cells and reducing allergic symptoms. 43% of patients prescribed ketotifen through RTHM Direct saw improvements in their overall symptoms, and 36% of those reported moderate to significant benefits. 20% Experienced a decrease in GI issues 23% Saw improved tolerance of foods 23% Had reported better sleep 31% Saw decreased allergic symptoms All data presented is based on internal patient outcomes from the RTHM Direct Clinic. MCAS Review This systematic review evaluates the effectiveness and safety of H1 antihistamines and mast cell stabilizers, such as ketotifen, in the treatment of MCAS. Ketotifen showed significant MCAS symptom reduction, however, it can cause tiredness that should be considered when dosing. https://onlinelibrary.wiley.com/doi/10.1111/all.12672
September 9, 2025 at 3:11 PM
ehlersdanlos.bsky.social
#Ad The Ehlers-Danlos Society is delighted to welcome @rthm.bsky.social as Sponsors of the 2025 International Scientific Symposium, September 17-21! ⁠[Thread]
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rthm DIRECT 3 Treatments for POTS and MCAS That Can Help EDS Patients → 1. Low-Dose Naltrexone (LDN) LDN could be an effective option for both POTS and MCAS, helping to reduce inflammation and improve immune function. 53% of patients prescribed LDN from RTHM Direct saw overall improvements in their symptoms, and 39% of those reported moderate to significant benefits. 31% Experienced reduced fatigue 24% Had improved mental clarity 28% Saw reduced aches and pains 20% Experienced improved PEM All data presented is based on internal patient outcomes from the RTHM Direct. LDN Case Report In a case report, a patient experienced a 7% decrease in POTS and a 17% decrease in MCAS severity scores while taking ultra Low Dose Naltrexone over a six week period prior to starting IVIG. https://pmc.ncbi.nlm.nih.gov/articles/PMC5778345
September 9, 2025 at 3:11 PM
ehlersdanlos.bsky.social
Our Let’s Chat: Parents group is for parents with EDS or HSD or parents of children with #EDS or #HSD. Join other parents tomorrow on Zoom and meet others who understand. ⁠
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Date: Wednesday, September 3
Time: 12:00 pm ET forms.monday.com/forms/287901...
Graphic for 'Let's Chat: Parents' virtual support group. The design features a light blue world map background with a laptop displaying a video conference grid of blurred participants. Speech bubble icons with a person and a zebra are shown above the text.
September 2, 2025 at 4:33 PM
ehlersdanlos.bsky.social
Health Professionals - The Countdown to the 2025 International Scientific Symposium "Pathways to Progress: A Decade of Insights and Innovations in EDS & HSD⁠" Begins. Early bird pricing ends July 31, save $100!⁠ www.ehlers-danlos.com/events/inter...
The promotional image is an advertisement for the 2025 International Scientific Symposium hosted by The Ehlers-Danlos Society. It features a bold, professional layout with a blend of teal, blue, and green tones. At the top, the society’s logo—a stylized zebra head—is displayed next to the event title. The subtitle reads "Pathways to Progress: A Decade of Insights and Innovations in EDS & HSD," indicating the focus on Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders. A large callout in the center of the image announces "EARLY BIRD PRICING ENDS JULY 31!" in all capital letters within an outlined speech bubble shape. Below, two bullet points highlight additional information. The first uses a calendar icon and reads "Limited Time Remaining! International Scientific Symposium." The second, accompanied by a Canadian flag icon, states "Join us at: Toronto Canada and virtually worldwide," signaling a hybrid in-person and virtual event format. The background features faded imagery of past symposium scenes with attendees, computers, and presentation equipment, along with a translucent Canadian flag to emphasize the location.
July 23, 2025 at 3:21 PM
ehlersdanlos.bsky.social
The Ehlers-Danlos Society's global mission for EDS and HSD could receive a £2,000 boost with your help! 🧬👩🏽‍⚕️

🦓 Nominate The Ehlers-Danlos Society in the Movement For Good Awards — You can nominate from anywhere in the world.

Click here to nominate: movementforgood.com/index.php?cn...
A promotional graphic for The Ehlers-Danlos Society features an illustration of two hands exchanging a red heart. One hand is dark brown and reaches from the bottom, while the other is dark blue and reaches from the top. The heart has a small white plaster on it. On the right side, the text reads: “Give us a BOOST and help us win £2,000” followed by the website “movementforgood.com.” The Ehlers-Danlos Society logo with a zebra head is displayed above the text. At the bottom are the logos for "Movement for Good" and "Benefact Group."
July 21, 2025 at 11:41 AM
ehlersdanlos.bsky.social
💜 It’s Disability Pride Month! 💜

July is Disability Pride Month, a time to celebrate the EDS and HSD community and uplift disabled voices around the world.
Zebra logo in a disability pride month flag.
July 1, 2025 at 4:58 PM
ehlersdanlos.bsky.social
Join the #REDS4VEDS campaign today Friday, May 16, and help to raise awareness of vascular Ehlers-Danlos syndrome (vEDS).⁠ ⁠
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To take part simply:⁠
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🔴Wear something red⁠
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🤳 Post a picture on social media with the hashtag #REDS4VEDS⁠
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A group photo of diverse individuals from The Ehlers-Danlos Society, many of whom are wearing red clothing, standing in front of a red background with a heart-shaped logo containing a zebra head. Above the group is white text that reads, "The Ehlers-Danlos Society wears #REDS4VEDS," promoting awareness for Vascular Ehlers-Danlos Syndrome (VEDS).
May 16, 2025 at 5:26 AM
ehlersdanlos.bsky.social
Tell Your Healthcare Team About EDS ECHO!

This May, take one simple but powerful step to improve awareness, reduce diagnosis time, and enhance care for those with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)—
Promotional image for the Ehlers-Danlos Society ECHO program. At the top are two logos: one for the Ehlers-Danlos Society ECHO, featuring a zebra head, and the other for Project ECHO. Below the logos, there's an icon of open hands with a heart above them, followed by the text: "Everyone affected by the Ehlers-Danlos syndromes and hypermobility spectrum disorders deserves great care." The phrase "deserves great care" is in red. At the bottom of the image, four smiling individuals—a young child, a young adult, a senior, and another adult—are seated closely together, representing diverse ages and ethnic backgrounds, with a faint world map in the background.
May 12, 2025 at 4:02 PM