hEDSErica (Barnacles)

We are delighted to share the first adolescent and also parent/carer research on neurodivergence and hypermobility. Are you 18 -25 Diagnosed Autistic and/or ADHD Had a health professional indicate you are likely to have hEDS HSD or JH or have a formal diagnosis? Have attended secondary school for at least one year Parents/carers do you have a child with same criteria but aged 14-20? QR code here or go to sedsconnective.org or email researcher in the flyer. qualtricsxm2dbdmlsdy.qualtrics.com/jfe/form/SV_cO… #hypermobility #neurodivergence

I can't believe how many doctors and nurses told me over so many years that my pain was coming from my stupid brain confusing pain with the memory of pain, or otherwise exaggerating small pain into big pain, or mistaking non pain for pain. Now it's better not because I got therapy or took Cymbalta, but because a surgeon fixed the source of the pain. The medical industry needs to stop systematically gaslighting us.

My list of some recommended books on #EhlersDanlos Syndromes & #Hypermobility: ohtwist.com/eds-resources/… #EDS #HSD #fibromyalgia #MedEd #doctors #nurses #patients #medicine #EhlersDanlos #SED #NEISvoid #MedX #Zebras

@H2OhTwist I wish you all the best for the New Year. Hope you have a healthy/happy 2026. Thank you so much for all you do for the EDS/Hypermobile community.

Cross your toes for me, as I'm also going to try to keep my bouncing baby bee-loving photography business going too. I already have two markets scheduled in January and February! I'm suffering from success. It's gonna take everything I've got and I may drop a ball or two. ✌️🐝

Speaking of working while disabled, I'm starting my first new job in almost 8 years this month (January), and I'm mildly terrified. It's ideal: part-time remote database programming like I used to do before 2012. But I'm gonna be stressed to the gills keeping up.

If someone lived in your body for half a day, they’d stop asking why you’re tired. They’d stop questioning your pain. They’d stop assuming you’re “doing too little.” People make a lot of assumptions on appearance. Hypermobility means your body relies more on muscular effort and nervous system input to create stability. That translates into constant, low-level work, often without rest. • muscles working overtime • joints that need continuous monitoring • background pain that never fully disappears • fatigue that isn’t proportional to activity • a nervous system that rarely gets to stand down None of this is visible. But all of it is very real. If this resonates, you’re not alone. What would someone say if they spent half a day in your body?

It’s #TrusteesWeek! 💙 We want to say a huge thank you to all of our incredible Trustees for everything they do to guide and support SEDSConnective. A huge thank you to Kelly Harris one of our incredible trustees who also helps to run our free monthly support meetings in Brighton - we cannot thank you enough for all that you do!

Making Misdiagnosis and Misunderstanding a Thing of the Past - CPPs impact on the #EDS community over the last twelve years… buff.ly/3WvdAzt #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #CPP #ChronicIllness #NEISvoid #MedEd #MedTwitter #Zebras #Support

@H2OhTwist Oh no! I hope you feel better soon!

And... I'm coming down sick first time in ages. Praying it's not COVID, I've been NOVID this whole time. But. I've also been public facing and in crowds a lot recently so ... 🤞🤞🤞🥺

The MANY co-occurring conditions found in hypermobile & Ehlers-Danlos patients: ohtwist.com/about-eds/como… #EDS #HMS #fibromyalgia #medicine #MedEd #FOAMed #MedTwitter #Doctors #Nurses #hypermobility #POTS #MCAD #NEISvoid

@Grunt_ @ThePOTSPostman I feel a tightening sensation in my fingers and they hurt. Then when I look down at them, I see they are changing colour. They stop hurting when they go back to their usual colour. I've started wearing gloves a lot more!

@Barnacl3s @ThePOTSPostman My father was a lumberjack, worked without gloves, and got Raynauds a few times in winter. The combination of vibrations (chainsaw) and cold.

Anyone have any idea why my hands are doing this?

@pippaliciousj @DiaryofaSickGrl I subluxed my jaw once eating an apple too. The bloody thing wouldn't go back in by itself, so I was punching myself in the face until it shifted!

@DiaryofaSickGrl Bit an apple and dislocated my jaw. Fell over a bollard at my daughters school cos I wasn't looking and was laughing too hard to see it.

What’s the silliest way you’ve ever injured yourself?

@DiaryofaSickGrl I have lots of examples. Here are a few! I ruptured 2 ligaments in my ankle by getting up from the sofa (ankle rolled as I got up). I also injured my back once by closing a window. I also had a fractured spine recently for no apparent reason that I can pinpoint!

@Dmdav1 I empathise. I have useless veins too, except the one on the back of my right hand, which some clinicians are reluctant to use, "Oh, its much more painful to use the back of the hand." No, it really isn't, if the alternative is two black and blue arms and no vein found!

Don’t you just hate unsuccessful blood tests . 3 attempts in arm . Swop to butterfly 3 Attempts back of hand - probably insufficient blood for test . Then B12 injection . How’s your day going ? 🤣

Third. the inter-relationship of connective tissue & mast cells may lead people with #EDS or hypermobility spectrum disorder to be vulnerable to mast cell activation disorders, which can in turn prompt both #POTS & conditions like #LongCOVID and #MECFS. 8/ link.springer.com/article/10.100…

@jdibon Oh yes! I was told that it would improve with age- utter nonsense!!🤣🤣🤣 Here I am at 49, still feeling like my body is held together with chewing gum and dodgy knicker elastic, aching all the time, dizzy, headaches, gut issues, crooked wonky spine, etc,etc!!

Hands up if a doctor ever told you EDS would “get better with age” 🙋‍♀️🙋‍♂️ Many of us are told EDS improves with age. But while joints may feel stiffer, EDS still impacts every part of the body’s connective tissue — skin, vessels, organs, fascia, and more. In fact, the menopause can make things significantly worse for lots of people. I went downhill rapidly at this time and my mast cells decided it was time to party 🥳. I became unwell for several years searching for answers. So let’s bust this myth - for the majority of people, it does not appear to improve or magically go away with age. If only 🤔.

Some back-to-school tips and resources for parents of young #zebras, autistic or not: ohtwist.com/school-and-eds #EDS #hEDS #HSD #Hypermobility #POTS #MCAS #NEISvoid #Spoonies #Parents #School #autism #ADHD

📢Thrilled to announce our new advisor, Michael Dare, consultant physiotherapist in rheumatology and currently studying a 🦓 PhD in #hEDS (hypermobilityEhlers-Danlos Syndrome). We're excited to have him on board 🦓 #Hypermobility #EhlersDanlosSyndrome #Rheumatology #Physiotherapy #EhlersDanlosAwareness #HypermobilityMatters #RheumatologyCare #MedicalAdvisory #SEDSConnective #ConnectiveTissueDisorders #PhysiotherapyExperts #ZebraStrong #HEDSCommunity

These guys can really use a boost. Many writers and the editor are volunteering still. #EDS #HSD #hEDS

We're making sure our members' voice is heard! Our Chief Executive Susan Booth has announced an important #EnoughisEnough campaign update. Read all about it! ehlers-danlos.org/news/important… #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #InvisibleVisible