EDS Guardians, Inc.

Heard on the Bendy Bodies Podcast with the Hypermobility MD, Linda Bluestein, M.D. ... During his interview, Dr. Alan Hakim offered this "hypermobility hack" -- "Make sure that you keep as active as you can. Because losing activity -- it doesn't matter what your age or your disease is -- you will become more frail. And with frailty comes more unhealth. So keep as active as you can." Indeed. The key term is "as you can" and we know that physical activity can be triggering for people with POTS or ME/CFS ... so this advice needs to be applied individually and based on your health RIGHT NOW (which might be better or worse than it will be next week). We work with a lot of clients who have discovered -- as is nearly always the case -- the stronger they get, the stronger they get, and the weaker or more frail they get, the weaker or more frail they get. And we often have a choice ... between the mountain summit or the slippery slope. Keep climbing.

Last chance to score some SPECTACULAR prices during the www.ShopEhlersDanlos.com SUMMER SALE. All tees just $14 and up to 35% off everything in the store. Sale ends 12:00 noon Central July 1st! Don't miss it!! Hundreds of items for EDS patients, families, caregivers, and supporters! All proceeds benefit EDS Guardians, a 501(c)(3) charity devoted to supporting EDS patients in living their best, bendy lives. #EhlersDanlosSyndrome #EDS #ShopForACause

Researcher applications are now open for the DICE EDS & HSD Global Registry! The Ehlers-Danlos Society DICE Global Registry is an extensive repository of demographic, morbidity, and co-morbidity data from people of all ages who live with a type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD). The global registry is rich with data for cohort and nested case-control studies and is suited to interpopulation comparisons, providing rapid and cost-free access to a large community. It also provides access to specific groups identified as required by their demographics and health concerns for invited participation in new studies. We encourage researchers to consider the possibilities the DICE Registry can bring to your research. We look forward to exploring opportunities to assist and collaborate with you in supporting the EDS and HSD community and researching these conditions. Learn more here: https://lnkd.in/em-5TQDi

Our thanks to EDS expert Linda Bluestein, M.D. -- who serves on the board of directors at EDS Guardians, Inc. -- for this important, supportive article about the difficulties faced by EDS, HSD, and other connective-tissue-disorder patients when navigating the healthcare system. This article is written from a unique vantage point -- Dr. Bluestein is a board-certified anesthesiologist who was diagnosed with hypermobile #EhlersDanlosSyndrome at the height of her career in the operating room and has faced her own challenges (including dismissal from fellow physicians) in initially understanding her condition and getting the care she deserved. Dr. Bluestein is now an EDS patient and an EDS doctor, specializing exclusively in the care of patients with symptomatic joint hypermobility. She does a phenomenal job in this piece of recognizing why medical providers don't often know how to diagnose EDS and related conditions, and offering support to patients and providers alike as we navigate a new era in medical care for people with "bendy bodies." We strongly recommend this article for its practical tips on how to choose your medical team, how to communicate more effectively, and how to think about the doctor/patient relationship. EDS Guardians founder Kate Colbert, upon first meeting Dr. Bluestein, said it best: "I've never had a doctor who LIVES inside a body like mine. And now I do." Perspective is everything. https://lnkd.in/grRPnvPv

Are you an eBay seller? Sell for a cause! Please consider donating a portion of your proceeds to EDS Guardians, Inc. when you sell on eBay through their #eBayForCharity #SellForACause program. If you donate more than 10% of your proceeds to a 501(c)(3) eBay charity like us, it's WIN-WIN. Here's how: eBay reports that items that benefit charity may sell faster, even at a premium price! Donate 10% or more and your item will feature an attention-grabbing charity ribbon — it may even be listed in the Charity Shop. Plus, you reduce your seller fees and enjoy tax savings. If you're selling something (or a lot of things) on eBay, please consider supporting eBay charity EDS Guardians, Inc.. Learn more here: https://lnkd.in/gDkjm85y And share with other eBay sellers you know. THANK YOU! #eBay #eBaySeller #eBayReseller #eBayShop #EhlersDanlosSyndromes #EhlersDanlosSyndromes #EDS #Hypermobility

Happy New Year! There are many ways we can say it (and many languages in which to speak it). This year, we're choosing to let one of our beloved clients do the talking for us. Tune in to the video 🎥 below to hear her wish you a Happy New Year 🎉 ... in 51 different languages! Meet Nevra,* one of our favorite people. Nevra is a complex connective-tissue-disorder patient, diagnosed with #HypermobilitySpectrumDisorder and coping with #MECFS, neurological complications, and more. She is home-bound and usually bed-bound, but her joy and hopefulness and brilliance are boundless. ❤️ https://lnkd.in/gZf58EJ9 Nevra has been taking advantage of mentorship and advocacy services at EDS Guardians, Inc., whereby our volunteers help her to coordinate care, better understand her conditions, feel supported emotionally, and whereby our volunteers communicate directly with her medical team to ensure optimal outcomes. She lives in Pakistan and has benefitted from medical insights from esteemed healthcare providers around the world. The daily struggle for Nevra is significant, but with life-changing surgeries on the horizon, her future is bright. We hope that 2024 is her very best year yet. To help patients like Nevra, please consider a gift to EDS Guardians, Inc. at www.EDSguardians.org -- Happy New Year! -- -- -- -- *Patient story shared with permission. #EhlersDanlosSyndromes #EhlersDanlosSyndrome #EDS #HypermobileEhlersDanlosSyndrome #hEDS #PosturalOrthostaticTachycardiaSyndrome #POTS #MarfanSyndrome #Marfans #HypermobilitySpectrumDisorders #HypermobilitySpectrumDisorder #HSD #Hypermobility #SymptomaticJointHypermobility #JointHypermobility #EDSguardians #EDScharity #MyalgicEncophalomyelitis #ME #MECFS #ChronicFatigueSyndrome #Autism #AutismSpectrum #AutismSpectrumDisorder

Merry Christmas! All we want for Christmas THIS year is the promise of a BETTER year for EDS patients in 2024. 🎄 It’s a big wish and an achievable one with your help. We’re a charity in our infancy dedicated to Ehlers-Danlos Syndromes patients of all ages. And we’ve asked Santa to help us ensure that more EDS patients get the surgeries and other vital medical care they need. Generous donors (EDS elves!) will make that possible. Please GIVE before the clock strikes midnight on New Year’s Eve to be part of something extraordinary for the EDS community. www. EDSguardians.org How will your generous gifts 🎁 be used in the New Year? On planes, trains, automobiles, and hotels. We are pleased to announce that the EDS Guardians board has chosen — as our first initiative — a Travel Grant Program. The donations you make today will provide generous grants to patients and their families -- to offset the costs of medical travel (like airfare, hotel, rental car and fuel, medical equipment, and away-from-home dining). Please consider a generous gift to EDS Guardians (a 501(c)(3) nonprofit organization) as part of your year-end giving. And if your employer makes matching gifts, please DOUBLE the impact of your gift by asking your company to match your gift. EDS Guardians is a Benevity cause, and you may be able to make one-time and recurring gifts at work, even taking advantage of pre-tax payroll deductions. With your help, more EDS patients will get the care they need. Go here to DONATE NOW: https://lnkd.in/gebzK5dz EDS Guardians, Inc., is a federally recognized 501(c)(3) tax-exempt charity. Your gift may qualify as a charitable deduction for federal income tax purposes. Learn more at www.EDSguardians.org #EhlersDanlosSyndrome #EDS #ChronicIllness #MedicalCharity

Let YOUR story be part of the EDS Guardians story! We're a brand-new charity -- serving the #EhlersDanlosSyndromes community -- and we're building our website. Sure, we could use stock photos to design the site, but we'd rather showcase REAL people in the EDS community. Get involved! Be featured on our website! Have a photo from your #EDS journey that you think tells a relatable story? Submit your photos here or to Kate@EDSguardians.com, tell us about the photo and tell us how (or if) you'd like to be credited (e.g.., Photo courtesy of Jim Advy, Chicago, IL). Photo ideas: -- Smiling faces of EDS patients at any age -- Living your best life on a "good day" -- Keeping it real on a "hard day" -- EDSers showing off their medical devices, equipment, aids (e.g., walkers, canes, wheelchairs, ports, joint braces, feeding tubes, Body Braids, neck braces, med/supplement bottles) -- Healthcare photos (at clinics, hospitals, PT/physio, etc.) -- Family photos where one or more family members have EDS -- Medical travel photos (living in hotels, taking road trips or airplane trips to see specialists) -- Patient/caregiver photos -- Creative shots that showcase something about being bendy or having issues with your tissues -- you in zebra print, you showing off your Gorlin sign (touching tongue to tip of nose), you showing off an EDS/POTS/MCAS-themed tattoo (Note: We do NOT encourage people to do "party tricks" with their hypermobile joints but if you have a photo that shows this, we'd love to see it) Show us the beautiful EDSers in your life!

All we want for Christmas is for more EDS patients to get the surgeries and other vital medical care they need. Generous donors will make that possible. We are pleased to announce that the EDS Guardians board has chosen as our first initiative a Travel Grant Program. As such, we are fundraising to be able to provide generous grants to patients and their families -- to offset the costs of medical travel (like airfare, hotel, rental car and fuel, medical equipment, and away-from-home dining). Please consider another generous gift to EDS Guardians (a 501(c)(3) nonprofit organization) as part of your year-end giving. With your help, more EDS patients will get the care they need. Go here to DONATE NOW: https://gofund.me/3486bb5e EDS Guardians, Inc., is a federally recognized 501(c)(3) tax-exempt charity. Your gift may qualify as a charitable deduction for federal income tax purposes. #EhlersDanlosSyndromes #EhlersDanlosSyndrome #EDS #PosturalOrthostaticTachycardiaSyndrome #POTS #MastCellActivationSyndrome #MCAS #Hypermobility #SymptomaticJointHypermobility #ConnectiveTissueDisorder #CollagenDisorder #ZebraStrong #TetheredCordSyndrome #CraniocervicalInstability #ChiariMalformation #ChronicIllness

We're new to LinkedIn because we're new to the world. Hello! Please follow, share, donate, and volunteer. The #EhlersDanlosSyndromes community has never before had a charity that sought to fill the practical, personal gaps that make living with EDS (and caring for an EDS patient) so difficult, especially during the lead-up to and recovery from surgeries. EDS Guardians, Inc., is the world’s first patient-to-patient, caregiver-to-caregiver, “pay-it-forward” organization dedicated to helping Ehlers-Danlos Syndromes (EDS) patients who lack support and need vital medical treatment, community, and compassionate care. EDS Guardians is a 501(c)(3) public charity founded by EDS patient and healthcare advocate Kate Colbert, on the principle that the world would be a better place for children and adults with chronic illness if the patients themselves — the true experts — charted the course toward a brave new future where EDS patients finally feel fully seen and believed, medically and practically cared for, and valued and loved for their inherent strength and beauty. EDS Guardians was founded in 2023 with a Board of Directors comprising EDS patients, caregivers, and medical experts, and will be unveiling practical and inspiring programs to bring together caregivers and patients in need with those who are strong enough to help. The organization will be offering travel grants for patients needing to travel for medical care, as well as other practical support programs and educational offerings. We look forward to getting to know you all and to doing remarkable things on behalf of the millions of of #hypermobile people across the United States and around the world. Thank you for taking this journey with us. Learn more and donate: https://gofund.me/3486bb5e