#EhlersDanlosSyndrome

AyaYeaaa nope. Love when people try to guess why we use mobility aids. It’s a fun little game where we get to either explain the sotuation and have them criticize us or we don’t explain and they criticize us anyways. Luckily, Luna didn’t have to go through that. A sinple “no” with no other explanation went a long way for her. The startegy here is to just answer as vaguely as possible and stare at them. Just stare. Stare like you’re waiting for the next guess, or like you’re waiting for them to follow up. It works like a charm. Ever had this happen to you? Tell us your stories in comments! Wanna help us create and post more comics? Support us on Patreon (link in bio)! You’ll get exclusive content, early access, and a warm feeling in your tummy! 😊❤️ <a href="https://pixelfed.social/discover/tags/ADayInTheLuna?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#ADayInTheLuna</a> <a href="https://pixelfed.social/discover/tags/Healthcare?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#Healthcare</a> <a href="https://pixelfed.social/discover/tags/Disability?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#Disability</a> <a href="https://pixelfed.social/discover/tags/MobilityAid?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#MobilityAid</a> <a href="https://pixelfed.social/discover/tags/EhlersDanlosSyndrome?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> <a href="https://pixelfed.social/discover/tags/Fibromyalgia?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#Fibromyalgia</a>

AaronHow do you know if you've popped a rib "out of socket"?I sneezed this morning and thought I pulled a muscle, but the pain is intense and hasn't let up all day. I started to wonder if it was something more when I sneezed again this evening, and there was a very clear popping sensation accompanied by even more intense pain. It's right around the area where my rib would meet the cartilage next to my sternum.I've been unable to cough effectively all day long. Every cough, even a mild one, is super painful. Meanwhile, I feel like I'm suffocating or drowning because I can't clear my airway effectively.If it is a dislocated rib, what do I do? How do I fix it or at least get the pain to ease up? How do I stop this from happening again?<a href="https://techhub.social/tags/EhlersDanlos" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlos</a> <a href="https://techhub.social/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> <a href="https://techhub.social/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://techhub.social/tags/dislocation" class="mention hashtag" rel="nofollow noopener" target="_blank">#dislocation</a> <a href="https://techhub.social/tags/ChestPain" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChestPain</a> <a href="https://a.gup.pe/u/eds" class="u-url mention" rel="nofollow noopener" target="_blank">@eds</a>

lee - no pronouns :v_greyace:Today is the 1st of May, which means it's the start of Ehlers Danlos Syndrome and Hypermobile Spectrum Disorder Awareness Month!Hello and solidarity to all of my zebra siblings 🦓 <a href="https://lgbtqia.space/tags/hypermobilesyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#hypermobilesyndrome</a> <a href="https://lgbtqia.space/tags/Hypermobilespectrum" class="mention hashtag" rel="nofollow noopener" target="_blank">#Hypermobilespectrum</a> <a href="https://lgbtqia.space/tags/hypermobilespectrumdisorder" class="mention hashtag" rel="nofollow noopener" target="_blank">#hypermobilespectrumdisorder</a> <a href="https://lgbtqia.space/tags/HSD" class="mention hashtag" rel="nofollow noopener" target="_blank">#HSD</a> <a href="https://lgbtqia.space/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://lgbtqia.space/tags/vEDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#vEDS</a> <a href="https://lgbtqia.space/tags/hEDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#hEDS</a> <a href="https://lgbtqia.space/tags/ehlersdanlos" class="mention hashtag" rel="nofollow noopener" target="_blank">#ehlersdanlos</a> <a href="https://lgbtqia.space/tags/ehlersdanlossyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ehlersdanlossyndrome</a> <a href="https://lgbtqia.space/tags/hypermobility" class="mention hashtag" rel="nofollow noopener" target="_blank">#hypermobility</a> <a href="https://lgbtqia.space/tags/hypermobile" class="mention hashtag" rel="nofollow noopener" target="_blank">#hypermobile</a> <a href="https://lgbtqia.space/tags/hsd" class="mention hashtag" rel="nofollow noopener" target="_blank">#hsd</a> <a href="https://lgbtqia.space/tags/chronicillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#chronicillness</a> <a href="https://lgbtqia.space/tags/chronicpain" class="mention hashtag" rel="nofollow noopener" target="_blank">#chronicpain</a>

Love NHL<a href="https://www.lovenhl.com/1356970/" rel="nofollow noopener" target="_blank">https://www.lovenhl.com/1356970/</a> Chaz Lucius Retires at 21: The Heartbreaking Story Behind His Decision <a href="https://channels.im/tags/AthleteHealth" class="mention hashtag" rel="nofollow noopener" target="_blank">#AthleteHealth</a> <a href="https://channels.im/tags/CentralDivision" class="mention hashtag" rel="nofollow noopener" target="_blank">#CentralDivision</a> <a href="https://channels.im/tags/ChazLucius" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChazLucius</a> <a href="https://channels.im/tags/EDSAwareness" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDSAwareness</a> <a href="https://channels.im/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> <a href="https://channels.im/tags/HealthStruggles" class="mention hashtag" rel="nofollow noopener" target="_blank">#HealthStruggles</a> <a href="https://channels.im/tags/HockeyRetirement" class="mention hashtag" rel="nofollow noopener" target="_blank">#HockeyRetirement</a> <a href="https://channels.im/tags/NHL" class="mention hashtag" rel="nofollow noopener" target="_blank">#NHL</a> <a href="https://channels.im/tags/ProfessionalHockey" class="mention hashtag" rel="nofollow noopener" target="_blank">#ProfessionalHockey</a> <a href="https://channels.im/tags/SportsNews" class="mention hashtag" rel="nofollow noopener" target="_blank">#SportsNews</a> <a href="https://channels.im/tags/WesternConference" class="mention hashtag" rel="nofollow noopener" target="_blank">#WesternConference</a> <a href="https://channels.im/tags/WinnipegJets" class="mention hashtag" rel="nofollow noopener" target="_blank">#WinnipegJets</a>

RinUmm… so this happened 🤩 Wheels🧡 great way for me to get around town and take photos 📷 Going to need some practice keeping balance 🤭😳 and finally I can ride something and touch the ground when I stop! Big thanks to my wonder partner for helping me get this set up 🫶 <a href="https://pixelfed.social/discover/tags/scooter?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#scooter</a> <a href="https://pixelfed.social/discover/tags/wheels?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#wheels</a> <a href="https://pixelfed.social/discover/tags/shortgirl?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#shortgirl</a> <a href="https://pixelfed.social/discover/tags/eds?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#eds</a> <a href="https://pixelfed.social/discover/tags/ehlersdanlossyndrome?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#ehlersdanlossyndrome</a> <a href="https://pixelfed.social/discover/tags/invercargill?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#invercargill</a> <a href="https://pixelfed.social/discover/tags/photography?src=hash" class="u-url hashtag" rel="nofollow noopener" target="_blank">#photography</a>

Max R. Cerrina (he/him)I am sorry to report that I need to adjust the clasps on my right thumb splint, a task which always overtaxes the joints I need the splint for 🤣 <a href="https://tech.lgbt/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://tech.lgbt/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> <a href="https://tech.lgbt/tags/disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#disability</a>

BroadwaybabytoWhat’s happened to curiosity in medicine? A story of two appointments. If you’re a healthcare worker and your patient says they’re in pain, a medication isn’t working or something doesn’t seem right … listen to them. If what they’re saying seems “odd”… don’t dismiss them out of hand. Get curious. Ask questions. Listen to the patient.The human body is incredible and unique. We all respond in different ways - and we learn more about the human condition every day. If something isn’t “adding up”… it could be a missed diagnosis. Here’s one of my most frustrating examples:I go to the doctor with a strange type of infection that is usually only seen in end stage AIDS patients.Doctor: “Have you been tested for HIV?”Me: “Yes - it was negative.”Doctor: “huh. You sure? Let’s test you again.”It comes back negative AGAINMe: “so what now?”Doctor: “I don’t know. That’s really weird. Here’s the medication we would give you IF you had AIDS.”That was IT. No follow up. Zero curiosity. No testing to determine WHY I had an infection only seen in AIDS patients when I did not have AIDS. Heck they wouldn’t even run an immune panel to take a closer look at my CD4 and CD8 count. It was just “sorry about your luck but this is not my problem.”Contrast that with one of my BEST experiences with a VERY curious doctor:I was there for suspected POTS which I was diagnosed with. In the process the cardiologist found an aneurysm and felt that given my age, lifestyle and persistently LOW blood pressure it was “odd” for me to have one.She gave me a huge questionnaire of seemingly unrelated questions to fill out - about everything from dental issues to gynaecology and what I was like as a young child.She reviewed the questionnaire with me and really took the time to LISTEN. We talked about previous illnesses, injuries, surgeries and how I felt in my body. I was treated like the expert - which had never happened before.I left that appointment exhausted and stunned as it was the first time a doctor had worked so collaboratively with me. I was referred to genetics where I was finally given the diagnosis that put all the missing pieces together - EDS (Ehlers Danlos Syndrome).The signs had been there for years - but no one ever slowed down and spoke to me long enough to realize it. No one was curious enough. No one asked me what it was like to be in MY body. It seems so simple - yet it’s a skill many healthcare workers lack.My ask of them tonight is to listen to your patient. Let them be partners in their care. Respect that while they may not have a medical degree - they are the experts in their own body and can help you if you let them.Be curious. Always.<a href="https://zeroes.ca/tags/curiousity" class="mention hashtag" rel="nofollow noopener" target="_blank">#curiousity</a> <a href="https://zeroes.ca/tags/medicine" class="mention hashtag" rel="nofollow noopener" target="_blank">#medicine</a> <a href="https://zeroes.ca/tags/healthcare" class="mention hashtag" rel="nofollow noopener" target="_blank">#healthcare</a> <a href="https://zeroes.ca/tags/misdiagnosis" class="mention hashtag" rel="nofollow noopener" target="_blank">#misdiagnosis</a> <a href="https://zeroes.ca/tags/gaslighting" class="mention hashtag" rel="nofollow noopener" target="_blank">#gaslighting</a> <a href="https://zeroes.ca/tags/believepatients" class="mention hashtag" rel="nofollow noopener" target="_blank">#believepatients</a> <a href="https://zeroes.ca/tags/believewomen" class="mention hashtag" rel="nofollow noopener" target="_blank">#believewomen</a> <a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#chronicillness</a> <a href="https://zeroes.ca/tags/zebra" class="mention hashtag" rel="nofollow noopener" target="_blank">#zebra</a> <a href="https://zeroes.ca/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://zeroes.ca/tags/ehlersdanlossyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ehlersdanlossyndrome</a> <a href="https://zeroes.ca/tags/pots" class="mention hashtag" rel="nofollow noopener" target="_blank">#pots</a> <a href="https://zeroes.ca/tags/mcas" class="mention hashtag" rel="nofollow noopener" target="_blank">#mcas</a> <a href="https://zeroes.ca/tags/DysautonomiaAwarenessMonth" class="mention hashtag" rel="nofollow noopener" target="_blank">#DysautonomiaAwarenessMonth</a> <a href="https://zeroes.ca/tags/Dysautonomia" class="mention hashtag" rel="nofollow noopener" target="_blank">#Dysautonomia</a> <a href="https://zeroes.ca/tags/ableism" class="mention hashtag" rel="nofollow noopener" target="_blank">#ableism</a> <a href="https://zeroes.ca/tags/disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#disability</a> <a href="https://zeroes.ca/tags/disabled" class="mention hashtag" rel="nofollow noopener" target="_blank">#disabled</a> <a href="https://zeroes.ca/tags/misogyny" class="mention hashtag" rel="nofollow noopener" target="_blank">#misogyny</a>

Ruth Cheesley (she/her)Earlier this month I wrote and recorded an audio version of a blog post for <a href="https://mastodon.online/tags/Breathworks" class="mention hashtag" rel="nofollow noopener" target="_blank">#Breathworks</a> as part of <a href="https://mastodon.online/tags/PainAwarenessMonth" class="mention hashtag" rel="nofollow noopener" target="_blank">#PainAwarenessMonth</a> about my journey with Ehlers-Danlos Syndrome and how I've worked with the many challenges faced since my big health crash around 15 years ago, leading to doing two ultramarathons. Have a read, or have a listen (it's linked at the top of the page to Breathworks' Soundcloud).<a href="https://www.breathworks-mindfulness.org.uk/blog/living-with-ehlers-danlos-how-i-ran-50-miles-to-support-breathworks" rel="nofollow noopener" translate="no" target="_blank">https://www.breathworks-mindfulness.org.uk/blog/living-with-ehlers-danlos-how-i-ran-50-miles-to-support-breathworks</a><a href="https://mastodon.online/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> <a href="https://mastodon.online/tags/ultrarunning" class="mention hashtag" rel="nofollow noopener" target="_blank">#ultrarunning</a> <a href="https://mastodon.online/tags/running" class="mention hashtag" rel="nofollow noopener" target="_blank">#running</a> <a href="https://mastodon.online/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://mastodon.online/tags/breathworks" class="mention hashtag" rel="nofollow noopener" target="_blank">#breathworks</a> <a href="https://mastodon.online/tags/Endure24" class="mention hashtag" rel="nofollow noopener" target="_blank">#Endure24</a>

bitcrush.ioHoly cow! <a href="https://www.ehlers-danlos.com/new-research-identifies-potential-biomarkers-for-diagnosing-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/" rel="nofollow noopener" translate="no" target="_blank">https://www.ehlers-danlos.com/new-research-identifies-potential-biomarkers-for-diagnosing-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/</a>There's extensive evidence that I have some variation of hereditary hypermobility disorder/Ehlers-Danlos Syndrome, which of course is the only type of EDS not to have any diagnostic tests available - you have to fight with a series of doctors, each stronger than the last, to convince them that it's the only explanation that lines up, and the mean time to diagnosis is *12 YEARS*.Looks like they finally found it! Plasma fragment patterns that showed up in 100% of diagnosed patients and 0% of healthy patients or similar-symptom diseases. Go science!<a href="https://oldbytes.space/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> <a href="https://oldbytes.space/tags/Hypermobility" class="mention hashtag" rel="nofollow noopener" target="_blank">#Hypermobility</a> <a href="https://oldbytes.space/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a>

Cassian [main]Now that this poll about hypermobility and broken bones has closed, here's some results.57 hypermobile participants. 31.6% had broken any bones, 66.7% hadn't.145 regularmobile participants. 31.7% had broken any bones, 68.3% hadn't.I conclude: hypermobility probably doesn't affect whether or not you break any bones, maybe?<a href="https://eldritch.cafe/tags/poll" class="mention hashtag" rel="nofollow noopener" target="_blank">#poll</a> <a href="https://eldritch.cafe/tags/polls" class="mention hashtag" rel="nofollow noopener" target="_blank">#polls</a> <a href="https://eldritch.cafe/tags/hypermobility" class="mention hashtag" rel="nofollow noopener" target="_blank">#hypermobility</a> <a href="https://eldritch.cafe/tags/hypermobile" class="mention hashtag" rel="nofollow noopener" target="_blank">#hypermobile</a> <a href="https://eldritch.cafe/tags/hEDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#hEDS</a> <a href="https://eldritch.cafe/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://eldritch.cafe/tags/EhlersDanlos" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlos</a> <a href="https://eldritch.cafe/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a>

Cassian [main]How many bones have you broken, and are you hypermobile?This is a poll for everyone, but I'm tagging a few specific groups to make sure I get a good sample!<a href="https://eldritch.cafe/tags/poll" class="mention hashtag" rel="nofollow noopener" target="_blank">#poll</a> <a href="https://eldritch.cafe/tags/polls" class="mention hashtag" rel="nofollow noopener" target="_blank">#polls</a> <a href="https://eldritch.cafe/tags/hypermobility" class="mention hashtag" rel="nofollow noopener" target="_blank">#hypermobility</a> <a href="https://eldritch.cafe/tags/hypermobile" class="mention hashtag" rel="nofollow noopener" target="_blank">#hypermobile</a> <a href="https://eldritch.cafe/tags/hEDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#hEDS</a> <a href="https://eldritch.cafe/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://eldritch.cafe/tags/EhlersDanlos" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlos</a> <a href="https://eldritch.cafe/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a>

BroadwaybabytoWhen I was 21 I was told that pregnancy could (and probably would) kill me AND that I was likely infertile. I asked to have my tubes tied & was told “you’re too young. You may change your mind & want kids.”🧵 on reproductive health, bodily autonomy & misogyny in medicine.First off - this was devastating news at such a young age. I had stage 4 endometriosis, a tipped uterus, adenomyosis & other health issues that made pregnancy unlikely AND dangerous. I was told in the event I became pregnant - they would have to recommend termination. Abortion would ALSO be risky to my health - though less risky than carrying a pregnancy to term. Given the threat it seemed perfectly reasonable to request a more fail safe method of birth control (tubal ligation). I was having laproscopic surgery anyways to try and remove some of the endometriosis - so they were literally already going to be operating. Tying my tubes was a negligible risk compared to the rest of the surgery. Imagine my shock when I was informed they wouldn’t do it because I might change my mind and want kids.I asked them whether my “changing my mind” would change my prognosis or their recommendation. Nope. They would still recommend termination.This was the first time I truly understood how deep misogyny and patriarchal values ran in medicine. My theoretical ability to bear children - whether I wanted them or not and whether it was safe or not - was more important than my health and my life. It was infuriating. An IUD wasn’t an option for a myriad of reasons so I was stuck on hormonal birth control that I didn’t tolerate well. I was also getting sicker from the endometriosis & adenomyosis… and it quickly became clear a hysterectomy would be best for me.Given doctors weren’t willing to entertain a tubal ligation - you can only imagine how they felt about a hysterectomy. Same tired arguments about how I could change my mind, I was too young, what if I met a man who wanted kids blah blah blah. I got these responses from male and female physicians - all of whom were willing to let my health significantly deteriorate rather than “make me barren”. None of whom listened to what I wanted to do with MY body. I continued to push for surgery because I knew it was what I needed - and was forced to undergo multiple psych evaluations. I heard everything from “don’t you want to be a mother” to “what if you meet the man of your dreams & he leaves you because you can’t have kids?.” How is it appropriate to ask ANY woman these questions? Let alone a woman who has been told - repeatedly - that pregnancy would put her life in jeopardy? It was as though they thought something was wrong with me because I didn’t want to risk my life for a hypothetical baby. 1/2<a href="https://zeroes.ca/tags/womenshealth" class="mention hashtag" rel="nofollow noopener" target="_blank">#womenshealth</a> <a href="https://zeroes.ca/tags/endometriosis" class="mention hashtag" rel="nofollow noopener" target="_blank">#endometriosis</a> <a href="https://zeroes.ca/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://zeroes.ca/tags/ehlersdanlossyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ehlersdanlossyndrome</a> <a href="https://zeroes.ca/tags/pregnancy" class="mention hashtag" rel="nofollow noopener" target="_blank">#pregnancy</a> <a href="https://zeroes.ca/tags/gynecology" class="mention hashtag" rel="nofollow noopener" target="_blank">#gynecology</a> <a href="https://zeroes.ca/tags/obgyn" class="mention hashtag" rel="nofollow noopener" target="_blank">#obgyn</a> <a href="https://zeroes.ca/tags/abortion" class="mention hashtag" rel="nofollow noopener" target="_blank">#abortion</a> <a href="https://zeroes.ca/tags/reproductivehealth" class="mention hashtag" rel="nofollow noopener" target="_blank">#reproductivehealth</a> <a href="https://zeroes.ca/tags/reproductiverights" class="mention hashtag" rel="nofollow noopener" target="_blank">#reproductiverights</a> <a href="https://zeroes.ca/tags/abortionIShealthcare" class="mention hashtag" rel="nofollow noopener" target="_blank">#abortionIShealthcare</a> <a href="https://zeroes.ca/tags/patriarchy" class="mention hashtag" rel="nofollow noopener" target="_blank">#patriarchy</a> <a href="https://zeroes.ca/tags/misogyny" class="mention hashtag" rel="nofollow noopener" target="_blank">#misogyny</a> <a href="https://zeroes.ca/tags/Disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#Disability</a> <a href="https://zeroes.ca/tags/Ableism" class="mention hashtag" rel="nofollow noopener" target="_blank">#Ableism</a> <a href="https://zeroes.ca/tags/Denial" class="mention hashtag" rel="nofollow noopener" target="_blank">#Denial</a> <a href="https://zeroes.ca/tags/PublicHealth" class="mention hashtag" rel="nofollow noopener" target="_blank">#PublicHealth</a> <a href="https://zeroes.ca/tags/InfectionControl" class="mention hashtag" rel="nofollow noopener" target="_blank">#InfectionControl</a> <a href="https://zeroes.ca/tags/Eugenics" class="mention hashtag" rel="nofollow noopener" target="_blank">#Eugenics</a> <a href="https://zeroes.ca/tags/SafeHealthcare" class="mention hashtag" rel="nofollow noopener" target="_blank">#SafeHealthcare</a> <a href="https://zeroes.ca/tags/MaskUp" class="mention hashtag" rel="nofollow noopener" target="_blank">#MaskUp</a> <a href="https://zeroes.ca/tags/Spoonie" class="mention hashtag" rel="nofollow noopener" target="_blank">#Spoonie</a> <a href="https://zeroes.ca/tags/Discrimination" class="mention hashtag" rel="nofollow noopener" target="_blank">#Discrimination</a> <a href="https://zeroes.ca/tags/Dysautonomia" class="mention hashtag" rel="nofollow noopener" target="_blank">#Dysautonomia</a> <a href="https://zeroes.ca/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://zeroes.ca/tags/pots" class="mention hashtag" rel="nofollow noopener" target="_blank">#pots</a> <a href="https://zeroes.ca/tags/mcas" class="mention hashtag" rel="nofollow noopener" target="_blank">#mcas</a> <a href="https://zeroes.ca/tags/communitycare" class="mention hashtag" rel="nofollow noopener" target="_blank">#communitycare</a> <a href="https://zeroes.ca/tags/wearamask" class="mention hashtag" rel="nofollow noopener" target="_blank">#wearamask</a> <a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#chronicillness</a> <a href="https://zeroes.ca/tags/DisabilityRights" class="mention hashtag" rel="nofollow noopener" target="_blank">#DisabilityRights</a> <a href="https://zeroes.ca/tags/hysterectomy" class="mention hashtag" rel="nofollow noopener" target="_blank">#hysterectomy</a> <a href="https://zeroes.ca/tags/hystersisters" class="mention hashtag" rel="nofollow noopener" target="_blank">#hystersisters</a>

morgandawnHypermobility may increase Long Covid risk. Hypermobility is characterized by joints capable of moving beyond the normal range of motion, often due to abnormalities in connective tissue.<a href="https://sfba.social/tags/Covid" class="mention hashtag" rel="nofollow noopener" target="_blank">#Covid</a> <a href="https://sfba.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://sfba.social/tags/Hypermobility" class="mention hashtag" rel="nofollow noopener" target="_blank">#Hypermobility</a> <a href="https://sfba.social/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> <a href="https://sfba.social/tags/Disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#Disability</a> <a href="https://sfba.social/tags/SickTimes" class="mention hashtag" rel="nofollow noopener" target="_blank">#SickTimes</a><a href="https://thesicktimes.org/2024/08/06/double-trouble-hypermobility-may-increase-long-covid-risk/" rel="nofollow noopener" translate="no" target="_blank">https://thesicktimes.org/2024/08/06/double-trouble-hypermobility-may-increase-long-covid-risk/</a>

Tinker ☀️I fucking hate my body. Fucking bullshit loose connecting tissue hypermobile Ehlers Danlos Syndrome trash.Fuck.I go for a light swim. To get started working out again.And my knee dislocates SIDEWAYS just doing a light fucking frogkick. Cause the only thing holding my knee in is a now-torn meniscus.This is why its so difficult to get back into working out. I ALWAYS injure myself. No matter how light I work out.And even if I work out correctly and nothing gets injured everything locks down and I need a regular expensive routine of Ashiatsu foot walking massage just to get range of motion back.Fuck. I'm going to keep at it. Just gotta wait a week while my meniscus heals a bit.Note: If you work out but don't have loose connecting tissues, none of what you know applies to me. None of it. It I follow your advice I will injure myself even worse. "Light" exercise for normal bodies destroys me. But! It you have specific trained experience coaching EDS or living with it, I'd love to hear your advice or perspective. <a href="https://infosec.exchange/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://infosec.exchange/tags/ehlersdanlossyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ehlersdanlossyndrome</a>

ImmedicableMELife hack for women/females with <a href="https://mastodon.online/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> : start wearing underwear that’s in a boxer style (I like Woxers) or has the elastic completely encased in fabric. I had no idea that the irritation from elastic along the legs was something I didn’t have to live with and now that I know, you’ll have to pry my Woxers out of my cold dead fingers! <a href="https://mastodon.online/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://mastodon.online/tags/Spoonie" class="mention hashtag" rel="nofollow noopener" target="_blank">#Spoonie</a> <a href="https://mastodon.online/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a>

Ruth Cheesley (she/her)Here we go folks! 12 noon tomorrow (Saturday) I start running, 12 noon on Sunday (or there about) I finish. 50 miles is the goal. Sponsorship link >> <a href="https://www.breathworks-mindfulness.org.uk/fundraisers/ruth-endure24" rel="nofollow noopener" translate="no" target="_blank">https://www.breathworks-mindfulness.org.uk/fundraisers/ruth-endure24</a> help me help Breathworks reach more people living with pain and illness!<a href="https://mastodon.online/tags/Endure24" class="mention hashtag" rel="nofollow noopener" target="_blank">#Endure24</a> <a href="https://mastodon.online/tags/UltraMarathon" class="mention hashtag" rel="nofollow noopener" target="_blank">#UltraMarathon</a> <a href="https://mastodon.online/tags/UltraRunning" class="mention hashtag" rel="nofollow noopener" target="_blank">#UltraRunning</a> <a href="https://mastodon.online/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a> <a href="https://mastodon.online/tags/EDSAthlete" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDSAthlete</a> <a href="https://mastodon.online/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> <a href="https://mastodon.online/tags/ThisGirlCan" class="mention hashtag" rel="nofollow noopener" target="_blank">#ThisGirlCan</a> <a href="https://mastodon.online/tags/VeganRunners" class="mention hashtag" rel="nofollow noopener" target="_blank">#VeganRunners</a> <a href="https://mastodon.online/tags/Breathworks" class="mention hashtag" rel="nofollow noopener" target="_blank">#Breathworks</a>

TarValon.NetThis week the Servant of All Team's EDS focus continues with a reflection from an anonymous member seen here about living with EDS and how best to support those living with it. Please join us as we continue our discussion of this important topic!<a href="https://buff.ly/3QZZaUd" rel="nofollow noopener" translate="no" target="_blank">https://buff.ly/3QZZaUd</a><a href="https://darkfriend.social/tags/AesSedai" class="mention hashtag" rel="nofollow noopener" target="_blank">#AesSedai</a> <a href="https://darkfriend.social/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> <a href="https://darkfriend.social/tags/Fandom" class="mention hashtag" rel="nofollow noopener" target="_blank">#Fandom</a> <a href="https://darkfriend.social/tags/Fansite" class="mention hashtag" rel="nofollow noopener" target="_blank">#Fansite</a> <a href="https://darkfriend.social/tags/TarValon" class="mention hashtag" rel="nofollow noopener" target="_blank">#TarValon</a> <a href="https://darkfriend.social/tags/TarValonNet" class="mention hashtag" rel="nofollow noopener" target="_blank">#TarValonNet</a> <a href="https://darkfriend.social/tags/TheWheelOfTime" class="mention hashtag" rel="nofollow noopener" target="_blank">#TheWheelOfTime</a> <a href="https://darkfriend.social/tags/TheWhiteTower" class="mention hashtag" rel="nofollow noopener" target="_blank">#TheWhiteTower</a> <a href="https://darkfriend.social/tags/TootersOfTime" class="mention hashtag" rel="nofollow noopener" target="_blank">#TootersOfTime</a> <a href="https://darkfriend.social/tags/WheelOfTime" class="mention hashtag" rel="nofollow noopener" target="_blank">#WheelOfTime</a> <a href="https://darkfriend.social/tags/WheelOfTimeSeries" class="mention hashtag" rel="nofollow noopener" target="_blank">#WheelOfTimeSeries</a> <a href="https://darkfriend.social/tags/WoT" class="mention hashtag" rel="nofollow noopener" target="_blank">#WoT</a>

Cassian [main]"‘Despite appearances, I finally realise I am not able-bodied’: novelist Daisy Lafarge on her hypermobility disorder"<a href="https://www.theguardian.com/society/article/2024/may/12/daisy-lafarge-ehlers-danlos-syndrome-lovebug" rel="nofollow noopener" translate="no" target="_blank">https://www.theguardian.com/society/article/2024/may/12/daisy-lafarge-ehlers-danlos-syndrome-lovebug</a><a href="https://eldritch.cafe/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a> <a href="https://eldritch.cafe/tags/EhlersDanlos" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlos</a> <a href="https://eldritch.cafe/tags/EDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#EDS</a>

TarValon.NetEDS is classified into 13 subtypes, some of which include hypermobile EDS, classical EDS, and vascular EDS. Additional symptoms of the various subtypes can include chronic headache, pregnancy complications, and hearing loss.<a href="https://darkfriend.social/tags/TwitterOfTime" class="mention hashtag" rel="nofollow noopener" target="_blank">#TwitterOfTime</a> <a href="https://darkfriend.social/tags/TarValonNet" class="mention hashtag" rel="nofollow noopener" target="_blank">#TarValonNet</a> <a href="https://darkfriend.social/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a>

TarValon.NetEhlers-Danlos Syndrome (EDS) is the generalized name for a group of connective tissue disorders characterized by hypermobile joints and hyperflexible, fragile skin. <a href="https://darkfriend.social/tags/TwitterOfTime" class="mention hashtag" rel="nofollow noopener" target="_blank">#TwitterOfTime</a> <a href="https://darkfriend.social/tags/TarValonNet" class="mention hashtag" rel="nofollow noopener" target="_blank">#TarValonNet</a> <a href="https://darkfriend.social/tags/EhlersDanlosSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#EhlersDanlosSyndrome</a>

Recent searches

Search options

Administered by:

Server stats:

#ehlersdanlossyndrome