The Ehlers-Danlos Society

Our Let's Chat Parents support group starts in one hour on Zoom. Come and speak with others who understand. ⁠ ⁠ Date: Wednesday, December 4, 2024⁠ Time: 12:00 pm Eastern Time (US and Canada)⁠ RSVP by clicking the link to receive email details of how to join: https://lnkd.in/eE_f-UnT Find all upcoming meeting dates here: https://lnkd.in/ghdxFPa

Every dollar you donate to The Ehlers-Danlos Society this #GivingTuesday will make twice the impact and help this critical work in funding research, expanding care, and educating healthcare professionals to continue. Your donation today will directly support research and care that can transform the lives of thousands living with EDS and HSD. Together, we can shorten the wait for a diagnosis and bring hope to families seeking better treatments. Thank you. ehlers-danlos.com/donate/ #TogetherWeDazzle #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #ZebraStrong

Our Let’s Chat: Parents group is for parents with EDS or HSD or parents of children with EDS or HSD. This group takes place once monthly and is a great place to share your experiences with others who understand what it is like to be affected by EDS and HSD as a parent. Join other parents tomorrow on Zoom and meet others who understand. ⁠ ⁠ Date: Wednesday, December 4, 2024⁠ Time: 12:00 pm Eastern Time (US and Canada)⁠ RSVP by clicking the link to receive email details of how to join: https://lnkd.in/eE_f-UnT Find all upcoming meeting dates here: https://lnkd.in/ghdxFPa

💜 Today is Giving Tuesday — Let’s Transform Lives Together! This is your chance to make an extraordinary impact. Today, your donation will go TWICE as far! Thanks to a generous matching donor, every dollar given will be doubled, up to $400,000. Your generosity fuels life-changing initiatives: 🤝 Providing critical support through our helpline and virtual groups, offering hope when it’s needed most. 🌍 Accelerating groundbreaking research to unlock better treatments and diagnostic tools. 📚 Educating healthcare professionals worldwide so they can recognize and treat Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) better. Imagine a world where every doctor, therapist, and specialist truly understands EDS and HSD—where no one feels dismissed, and every person gets the care they deserve. With your help, we can make this vision a reality. 💜 Together, we dazzle. Together, we change lives. Donate today and make a difference that will ripple through our community for years to come. https://lnkd.in/gbV4qcEM #ZebraStrong #GivingTuesday #TogetherWeDazzle #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder

Living with Ehlers-Danlos syndrome (EDS) is often a journey of managing symptoms, adapting to challenges, and finding the right support. But for Georgie Fox, it’s also about celebrating strength and embracing self-confidence. A few months ago, Georgie embarked on a mission to reclaim her narrative, organizing a photoshoot that celebrated individuals with hypermobile EDS (hEDS) and their mobility aids. What began as a self-portrait session quickly grew into a transformative event. Over 200 applications poured in, and Georgie hosted her first-ever mobility aids photoshoot, creating a safe space for participants to share their stories, laugh, and feel proud of their journeys. One attendee reflected, “From the moment everyone came together in the studio, all complete strangers meeting for the first time, I couldn’t stop smiling! It felt so incredibly comforting to be in a space filled with people who just get it, who understand what you are going through and can offer advice and support for each other.” EDS often hides in plain sight, its challenges invisible to others. Events like Georgie’s photoshoot shine a light on navigating life with a chronic condition. They also highlight the importance of community—a place to find understanding, strength, and shared joy. Georgie’s mission is far from over. She dreams of making these experiences more accessible to others in the EDS community. With funding and support, she hopes to host more events, spreading this message of self-love and connection even further. Read Georgie's full story: https://lnkd.in/esMi6dww #IDPWD #ZebraStrong #EhlersDanlosSyndrome #EDS #Disability

On #GivingTuesday, your gifts will do even more! 💜 Tomorrow, December 3, is Giving Tuesday and a donor whose family understands the challenges of living with these complex conditions is matching all donations! 🎁 Every donation made will be DOUBLED, accelerating research for future breakthroughs, and helping us educate health professionals to help change lives 🧬 Together we dazzle! https://lnkd.in/gbV4qcEM #GivingTuesday #EhlersDanlosSyndrome #Hypermobility #HypermobilitySpectrumDisorder #ZebraStrong

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 the chest, abdomen, or back. People may also feel or hear a "popping" or "clicking" sensation when the rib slips. The most common symptom is intercostal neuralgia, or nerve pain, which can be triggered or worsened by certain movements or trauma. SRS is poorly understood and often misdiagnosed, leading to significant delays in treatment. Hypermobile connective tissue disorders, including the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), may weaken the costochondral cartilage and ligaments, increasing the risk of SRS. Toyin recently had surgery for SRS and shares her story: “I made a sudden movement in the shower around August 2023 which resulted in costochondral injuries to the 8th and 9th rib. Subluxation to the left 8th costal cartilage and the 7th underriding the left 7th costal cartilage, with slipping of the 10th rib. I waited 6 months before receiving treatment. During this period I experienced symptoms of pain in my upper chest and lower abdomen, pain when applying pressure to the area. discomfort during movement such as twisting or bending which affected my quality of life. I was seen by a radiologist who referred me for further investigation such as CT and MRI scans which confirmed the diagnosis of Slipping Rib Syndrome. The radiologist referred me to see a surgeon and he expressed his concerns regarding the surgery such as potential nerve damage, especially in patients who have EDS, therefore the plan moving forward was to receive steroid injections and treat surgery as the last resort. I proceeded to have steroid injections to control the pain, eventually, this was not a long-term solution for me, as I found the injections wore off quickly. I was eventually admitted to hospital in September 2024 for SRS surgery. The plan of procedure was to insert titanium plates in between my ribs for stability and remove the ends of my floating ribs to relieve nerve pressure. However, this did not go as planned. Therefore I underwent a left open exploratory chest wall procedure with 8th,9th, and 10th rib excision. I feel the awareness of SRS and the connection it has with EDS is so important. Now looking back before my diagnosis, the signs were there, such as popping/clicking of the rib joints, and symptoms worsening with costochondritis during a cold/flu. It was only until I had the incident where everything made sense.”

🎶Enter the 2025 Zebras Got Talent show!⁠ 🎨 ⁠'Zebras Got Talent' is an in-person and online exhibition showcasing the community's creativity. We invite all artists and creators to participate by submitting their original work! Submissions could include a talent of your choice such as: ● Creative Writing (eg. poem, fictional story) ● Painting ● Drawing ● Graphic Design ● Photography ● Dance ● Video Performance ● Music Those joining us in person at the 2025 Global Learning Conference in Brisbane, Queensland, Australia, will have the opportunity to perform their talent live during the conference, and all entries will be uploaded for attendees to view and vote for their favorite on our event app, Whova. If you are not joining in person, you can submit a video of your talent, or a photograph or written piece for example which will be shown at the show. The closing date is January 10, 2025. Entrants can be any age, and those under 16 must have permission from a parent or guardian. You do not need to register for the conference to participate virtually. Learn more here: https://lnkd.in/ePzNfS3z

'I have learned to change my world to benefit me' - Meet Peyton who is 16 and a member of the @ehlers.danlos Teen Council! "My Ehlers-Danlos syndrome (EDS) journey started a long time ago. Aside from the typical growing pains and one-off symptoms from other conditions I have, I started truly getting symptoms a few years ago. Even as a dancer for half of my life, I never experienced the pain of ballet until the winter of 2021. I had my first hip subluxations, locking ankles, and hyperextensions. Working closely with a lovely physical therapist (PT), I fixed some things that helped me and my pointe work, but my hip hypermobility and subluxations bothered me too much to be arbitrary. In 2022 and 2023, I started seeing my primary care doctor for nervous system issues. In August last year, I almost fainted multiple times and started having problems with my heart. Starting and stopping numerous medications in the fall, I learned quickly that most meds didn’t interact well with my system, leaving me with nausea, dizziness, and vertigo in September and October. All of my new symptoms kept snowballing, leading to new doctor’s appointments. In November, I finally saw a rheumatologist and was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). The more I learn about it, the more I’m able to finally understand why my body doesn’t work properly. This year I’ve had a huge set of issues, especially with my dysautonomia, joint instability, gastrointestinal issues, and kidney system. I travel around once a month to go see different specialists three hours from me (thanks mom for always driving me!). I’m so grateful for the help my hospital has given me, the work my PT has done with me, and the strength I’ve gained to keep fighting every day. I dance pre-professionally now, and my body still has trouble keeping up from time to time. My health still feels largely invisible. Sometimes I have to hide my symptoms so I can continue to grow in dance, and that’s hit me hard emotionally. I have such an incredible support system though, and I couldn’t have made it this far without them. I have learned to change my world to benefit me: online schooling, meds, PT, exercise, and lots of moderating. I know I still have a long way to go and more problems to be diagnosed. I’m still here, and I hope that if I continue to spread my light, maybe people won’t feel as invisible as I once did. My chronic illnesses don’t define me. They just make me fight a little bit more than others. But they won’t ever stop me from doing what I love!" – Peyton What do you love doing and how have you adapted due to EDS or HSD? #ZebraStrong

Researchers at A.T. Still University are conducting a research study to explore the connection between pelvic health knowledge (health literacy) and confidence (self-efficacy) in managing symptoms of female pelvic health concerns in hypermobile Ehlers-Danlos Syndrome (hEDS). 📝 What’s Involved? 👉 A quick, 10-15 minute anonymous survey where you can share your experiences. 👉 Your participation could help improve care for others facing similar challenges. ✨ Who Can Participate? ✔️ Adults 18 years or older ✔️ Female sex at birth (presence of vulva/vagina at birth) ✔️ Diagnosed with hEDS ✔️ Experiencing pelvic health symptoms (e.g., bowel, bladder, or sexual health challenges) Participation is completely voluntary and confidential. 📲 Take the survey here: https://lnkd.in/esRXRV4t Please note, This is not a Society research survey. The Ehlers-Danlos Society posts any surveys that have IRB approval to give the community the opportunity to take part in research. By posting these survey opportunities this does not serve as an endorsement of the research taking place.