Aaaand this year seems to be a year for me collecting labels, I have H-EDS doc confirmed it this morning, nothing to be done so yay, referred to physio for a couple of joint instability issues he mentioned if it got worse they might do surgery
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#heds
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New #introduction post!
I'm Alicia and I'm a fibre artist (#dyeing #handspinning #felting #needlefelting #weaving #crochet #embroidery #upcycling #sewing) with interests in #mandala #art #psychedelicart #sacredgeometry #neurographicart and #watercolors.
My family and I run a business called @Fibre2Fabric where we dye all sorts of exotic #fibre #yarn, and #fabric.
I live in the country with my partner and our 6 #cats, 3 #dogs, #snake and #crestedgecko where I enjoy my many interests. (#gardening #plants #herbalism #fungi #music #ukulele #piano #dancing #flowart #reading #writing #tarot #poetry #haiku #cozygames and I'm getting more into #opensource / #linux)
When I say flow art, I mean spinning props like #hulahoop #leviwand #puppyhammer #poi #staff #silkfans #firefans etc.
I love #languagelearning. I studied #German and #Spanish as a kid, took #Japanese in uni, and I'm currently studying #ASL #Cree #Tokipona #Spanish and #Chinese. I also dabble in #French and #Latin sometimes and I'm learning #Greggshorthand to write faster. Cree is my favourite language and Spanish is my second.
I've been cursed since childhood with that lovely trifecta of #heds #pots and #mcas. Healing slowly but surely.
Hope I get to meet even more cool people the algorithms would normally drown out on other social media sites. I love it here!
Symptom: Coat Hanger Pain
I only learned about this term very recently, from yumpsuit on the Fediverse. Thank you so much for letting me know about it!
I am almost disproportionately thankful to have a handy description for letting people know what I’m feeling, as well as how to look for ways to try to mitigate the pain. Reading about Coat Hanger Pain resonated deeply, in a way similar to how I often feel when I get a diagnosis: a feeling of relief, connection, community, and hope.
Many people who have not been chronically ill see a diagnosis as a negative. Indeed, many disabled people are never told their diagnoses, and are never told they are disabled. This needs to change, because as Granite and Sunlight explained:
Many people are disabled for a long time before they get a diagnosis which explains what is happening to them, and there is a resistance in the medical profession to giving long-term diagnoses, especially for young people and for women with chronic conditions which lack good treatment options, because of an outdated belief that labels are limiting and they don’t want people to ‘see themselves as disabled’. The fact they are already disabled, already struggling, is why disability justice advocates are trying to help medical professionals change their approach to this. Most people just want answers and context for what is happening to them – not having a name for it doesn’t mean it isn’t affecting their lives. Diagnosis gives people access to context, support and community who can help a person manage the condition better, but these are not built into the medical response to disability. Despite these delays, the person is still disabled all that time, and still needs access to the support and adaptations which can help them live good lives managing their conditions.
For more information about this, I recommend Brianne of No End In Sight’s TEDx Talk, Disease Begins Before Diagnosis.
A late night thought for #EhlersDanlos zebras 
:
Used to get #MCAS reactions a lot with certain foods and drinks (inflammatory response) which made me feel lousy and warm or even overheated all year round.
So I cut them all out. But one unexpected reaction of cutting the offending items is I now feel cold most of the time.
Night all.
Came home after a tiresome trip to Dublin for medical appointment, and was feeling dreadfully tired and sore (due to #hEDS and #AutoimmuneArthritis) and rather sorry for myself. Cheered right up when saw this lovely book post of my Advanced Reader Copies of a book of essays by Irish autistic people that I had the honour of editing 
Adventure awaits! Gonna get out of the house on this cold day to go and see a friend. Definitely need to bring my #Rollator with me though because I messed up my right knee hardcore. It popped and cracked really hard last night and now my knee barely can carry weight without shaking horribly. All I did was stand up and turn to walk around the couch!
#hEDS #Sublaxation #LooseyGoosyJoints #Disabled
Welp I'm happy! I've been approved by my health insurance for my partners to get paid for what they're already doing. Aka taking care of me and helping me on my horrible days of flairs. That extra money is gonna help a ton! #Disabled #Polyamory #ChronicIllness #POTS #hEDS
Hey. Help us pay for my new wheelchair? I'm desperately hoping the issues with my current chair are that it's old and battered and possibly needs more in repairs than would be worth it (it's better than NOT having one, don't get me wrong...). But $1,100 (rounded slightly up) is a dear price even if cheaper than we'd ever get anything custom.
We're hoping to pay it off in chunks, since we used a credit card, but. The assurance of *having* the money to pay it off would be awesome - and y'all can say you helped buy my chair! Win/win!
Current goal is at 0/$100
(Unless that's changed literally while I've been typing 
)
My cashapp is $Inoru, spouse's CashApp is $ceahhettan and his
Venmo is @/californiummm; ask them for paypal/zelle. Comment wheelchair or a Blue wheelchair emoji with specifically-for-this donations! Any amount helps and I/we appreciate!
<*wiggles in New Wheelchair excitement*>
#crowdfund #crowdfunding #transcrowdfund #transcrowdfunding #disabledcrowdfund #disabledcrowdfunding #deafcrowdfund #deafcrowdfunding #helpfolkslive #HelpFolksLive2025 #mutualaid #MutualAidRequest #moneyhelp #ambulatorywheelchairuser #hEDS #hypermobility #hypermobileEhlersDanlosSyndrome #wheelchairuser #powerchair #wheelchaircrowdfunding #powerchaircrowdfunding #IsThisEnoughHashtags #hashtag
via @camilla
kolektiva.socialcamilla (@camilla@kolektiva.social)hi everyone! we have a new #MutualAid #MutualAidNeeded #MutualAidRequest #MastodonForHarris #Mastodon4Harris #HelpFolksLive #HelpFolksLive2025.
we just replaced @inoru_no_hoshi@blorbo.social's power wheelchair with a new one that'll be here Saturday, for the fun sum of $1093.95 on a credit card, with monthly payments of just under $100.
y'all, we bought this on faith and a prayer (and a reserve that will help but can't wholly cover the payments and help us not be crushed by poverty at the same time) because their old power wheelchair is unsafe now. it can't be driven across a curb cut without them ending up in the street, much more severely than my chair does. the motors struggle a good bit of the time.
part of them having independence is the power wheelchair, so I'm asking to help us with the price of agency and independence as disabled individuals. as y'all probably know, we're both disabled and neither of us work, and we mostly survive off of the good will and kindness of our close friends and random strangers.
goal $0/100
put wheelchair in the comments.
CashApp: $ ceahhettan
Venmo: @ californiummm
ask for PayPal/Zelle.
#Photomonday It's been a crazy weekend of hospital stays with family but the view helped me keep my sanity. #BrokenBody #heds #pnwviews #seattleskyline
Young woman with Ehlers-Danlos discusses her experience with gastroparesis -
What made my GASTROPARESIS better?!
https://youtu.be/ujtdwrGvne0?si=7dCWlo23xRCnNYdc
Story of the day! My heart rate went down to 40bpm while I was laying in bed, only thought to check cause I was tired and having trouble staying conscious. Checked it again after I moved some, went up to 75bpm. Then when I went to the bathroom, it went up to 133bpm. Just tried to do some dishes, started to get dizzy, so I sat down on the floor....and I passed out for a few seconds. Now I'm on the couch, with my electrolytes and watching Bones. Though I am disoriented and sorta dizzy still, not really sure what else to do. Oh, and im pretty sure I popped my ankle out and then back in socket. So that's my day, how's everyone else's going?
#Disabled #Disability #POTS #hEDS #HealthMatters
"Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders" edited by Diana Jovin
This is a collection of scientific research written by a variety of authors, readable for the general public. It's not just about hypermobility itself, but also about many others symptoms and illnesses that are frequently present with this syndrome/disorder.
It's interesting to read cover to cover, but I think it'll mostly serve well as a reference book. Or as a guide to use to look into symptoms one by one if you feel too overwhelmed to tackle everything at once.
Especially the chapters about physical therapy were useful for me at the moment. I'm keeping this (e)book around, because I'm sure I'll use it every now and then to look up certain information.
From the MassME newsletter
Study of interplay of cellular landscapes and the role of oxidative stress in various conditions
https://www.umassmed.edu/slusslab/reclaim-study/
#MEcfs #hEDS #HypermobilitySyndrome #Orthostaticintolerance #POTS #LongCOVID @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #ChronicLyme
#GulfWarIllness @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @longcovid
For about 4 years my #Arthritis and #hEDS were so bad that I couldn't physically attend any conferences. I love conferences as I love immersing my #Autistic self in a topic or theme, so it made me really sad.
In the next 2 weeks I am not only attending 2 conferences but I am speaking at 2 conferences: #ChildrensBooksIreland and #AsIAm annual conferences.
So grateful to my rheumatologist and physical trainer for making my wonky body work again.
A slightly more bite-sized version of the studies I just shared.
This is FUCKING HUGE.
First of all, it means all of us who never got a full hEDS diagnosis (or who got downgraded when the diagnostic criteria changed) probably have the exact same genetic condition.
Secondly, there’s eventually going to be able to be a TEST for this??? No more “it’s all in your head” or “it might be anxiety”
Continued thread
Please share the above research paper and this 2019 #hEDS and #JHS (used interchangeably for #HSD) population paper https://bmjopen.bmj.com/content/9/11/e031365
Both are vital in correcting social and medical misinformation about hypermobility, and helping patients get proper #EDS diagnoses and care
BMJ Open · Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparisonObjectives To describe the epidemiology of diagnosed hypermobility spectrum disorder (HSD) and Ehlers-Danlos syndromes (EDS) using linked electronic medical records. To examine whether these conditions remain rare and primarily affect the musculoskeletal system.
Design Nationwide linked electronic cohort and nested case–control study.
Setting Routinely collected data from primary care and hospital admissions in Wales, UK.
Participants People within the primary care or hospital data systems with a coded diagnosis of EDS or joint hypermobility syndrome (JHS) between 1 July 1990 and 30 June 2017.
Main outcome measures Combined prevalence of JHS and EDS in Wales. Additional diagnosis and prescription data in those diagnosed with EDS or JHS compared with matched controls.
Results We found 6021 individuals (men: 30%, women: 70%) with a diagnostic code of either EDS or JHS. This gives a diagnosed point prevalence of 194.2 per 100 000 in 2016/2017 or roughly 10 cases in a practice of 5000 patients. There was a pronounced gender difference of 8.5 years (95% CI: 7.70 to 9.22) in the mean age at diagnosis. EDS or JHS was not only associated with high odds for other musculoskeletal diagnoses and drug prescriptions but also with significantly higher odds of a diagnosis in other disease categories (eg, mental health, nervous and digestive systems) and higher odds of a prescription in most disease categories (eg, gastrointestinal and cardiovascular drugs) within the 12 months before and after the first recorded diagnosis.
Conclusions EDS and JHS (since March 2017 classified as EDS or HSD) have historically been considered rare diseases only affecting the musculoskeletal system and soft tissues. These data demonstrate that both these assertions should be reconsidered.
Continued thread
Huge #EDS news! What does this mean?
1) #hEDS, the only common EDS type at 1 in 500 and the only type without a biomarker until now, finally has a biomarker
2) #HSD was likely #hEDS all along as many suspected, and the 2017 reclassification was wrong 
https://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.63857
Replied in thread
an example of new onset skin stretchiness in someone with Long Covid, post includes photo:
https://twitter.com/D_Bone/status/1550692324941787136
It would be interesting to do skin biopsies and look at gene expression, protein level, and glycosylation differences between stretchy skin areas vs. non-stretchy skin.
~
edited to add:
So far I haven't seen a study like that for hEDS, EDS or Long Covid. It seems strange since it is the 1st thing I would do (and if I ever win the lottery, it would be the 1st study I would fund). If something similar has already been done then pls let me know.
X (formerly Twitter)DDave (@D_Bone) on XCOVID gave me stretchy skin. At first the docs thought it was the tremendous weight loss. But I’ve recovered the weight. Not the muscle lol, but the weight yes.
Anyhow, my skin still be doing this.