EDS Warrior (@bestlifewitheds) 's Twitter Profile
EDS Warrior

@bestlifewitheds

Living with Hypermobile Elher Danlos Syndrome, mum of three, loves art, food and wine. Tying to find the me in this debilitating chronic illness

ID: 1157568508470972416

calendar_today03-08-2019 08:26:53

310 Tweet

685 Followers

303 Following

Hypermobility MD: Dr Linda Bluestein (@bluesteinlinda) 's Twitter Profile Photo

Neurodivergency, #hypermobility and #dysautonomia are linked in fascinating ways. BendyBrain: Dr Jessica Eccles is leading this groundbreaking research. Check out her two interviews on my podcast, #Bendy Bodies as well as her many research papers. 2/2🦓🎙

OhTWIST.bsky.social now too (@h2ohtwist) 's Twitter Profile Photo

Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature 2022 Monaco, Choi, Uzun, Maitland and Riley buff.ly/3lVUcYF #EDS #MCAD #MCAS #NEISvoid #MedTwitter #MedEd #Hypermobilty

EDS & COVID-19 (@longcovid_heds) 's Twitter Profile Photo

I've made this account as a home for research and anecdotes including research papers, twitter threads, reddit posts, etc. that could potentially shed light on post-viral conditions such as #MECFS and #LongCovid and their relationship to #EDS and joint hypermobility (1/2)

Bea is Chronically Persisting✨ (@be_kinderr) 's Twitter Profile Photo

Well said about #EDS!!👏 And may this also come true for all invisible chronic illnesses, like #MECFS , Long Covid, POTS, and all comorbidities. 🙏💫 @CortDoesScience

Well said about #EDS!!👏 And may this also come true for all invisible chronic illnesses, like #MECFS , Long Covid, POTS, and all comorbidities. 🙏💫

@CortDoesScience
EDS Warrior (@bestlifewitheds) 's Twitter Profile Photo

Uploaded 23andMe to a raw data site. It's showing 4 clinically significant cancer predisposing variants, all mentioning Lynch Syndrome UK. I know there's numerous false positive, but 4 variants 😳 Have emailed GP 😬

Ashley James (@ashleyljames) 's Twitter Profile Photo

In the last couple of weeks I've learned from the police / media if I want to avoid going missing or being murdered I need to: Not be too ambitious or high-achieving. Not earn more than my partner (too late) Not go to a park. Not to drink alcohol. Not to go through menopause.

OhTWIST.bsky.social now too (@h2ohtwist) 's Twitter Profile Photo

The RCCX hypothesis *may* explain why #hEDS and the #HSD come with so many comorbidities: buff.ly/2HSYcTL #EDS #CFS #meded #EhlersDanlos #hypermobility #CAH #ME #Spoonie #POTS #MCAS #MyalgicE #MedTwitter #NEISvoid

The RCCX hypothesis *may* explain why #hEDS and the #HSD come with so many comorbidities: buff.ly/2HSYcTL #EDS #CFS #meded #EhlersDanlos #hypermobility #CAH #ME #Spoonie #POTS #MCAS #MyalgicE #MedTwitter #NEISvoid
EDS Warrior (@bestlifewitheds) 's Twitter Profile Photo

Another 2 labels to add to the ever growing collection #Erythromelalgia and #Sjogren 🙄😫 so over this sh**show! Anyone else?

OhTWIST.bsky.social now too (@h2ohtwist) 's Twitter Profile Photo

The RCCX hypothesis *may* explain why #hEDS and the #HSD come with so many comorbidities: buff.ly/2HSYcTL #EDS #CFS #meded #EhlersDanlos #hypermobility #CAH #ME #Spoonie #POTS #MCAS #MyalgicE #MedTwitter #NEISvoid

The RCCX hypothesis *may* explain why #hEDS and the #HSD come with so many comorbidities: 

buff.ly/2HSYcTL 

#EDS #CFS #meded #EhlersDanlos #hypermobility #CAH #ME #Spoonie #POTS #MCAS #MyalgicE #MedTwitter #NEISvoid
OhTWIST.bsky.social now too (@h2ohtwist) 's Twitter Profile Photo

Magnesium deficiency can explain several common symptoms in the Ehlers-Danlos and Hypermobility Spectrum Disorders. Source, Heidi Collins, an MD with #EDS: Part One: buff.ly/3WjqWLg Part Two: buff.ly/3ZGHAHu #nutrition #MedEd #EDS #HSD #MCAS #NEISvoid #Fibro

Disability Rights UK (@disrightsuk) 's Twitter Profile Photo

Disability Rights UK have issued a statement this afternoon, a response to the Chancellor Jeremy Hunts announcement on proposed benefit changes. The dangerous language issued deserves a truthful response. Please share. #benefits #JeremyHunt

Disability Rights UK have issued a statement this afternoon, a response to the Chancellor Jeremy Hunts announcement on proposed benefit changes. 

The dangerous language issued deserves a truthful response. Please share. #benefits #JeremyHunt
OhTWIST.bsky.social now too (@h2ohtwist) 's Twitter Profile Photo

The MANY co-occurring conditions found in hypermobile & Ehlers-Danlos patients: buff.ly/3akgbqa #EDS #HMS #fibromyalgia #medicine #MedEd #FOAMed #MedTwitter #Doctors #Nurses #hypermobility #POTS #MCAD #NEISvoid

The MANY co-occurring conditions found in hypermobile & Ehlers-Danlos patients: 

buff.ly/3akgbqa 

#EDS #HMS #fibromyalgia #medicine #MedEd #FOAMed #MedTwitter #Doctors #Nurses #hypermobility #POTS #MCAD #NEISvoid
OhTWIST.bsky.social now too (@h2ohtwist) 's Twitter Profile Photo

Magnesium deficiency can explain several common symptoms in the Ehlers-Danlos and Hypermobility Spectrum Disorders. Source, Heidi Collins, an MD with #EDS: Part One: buff.ly/3WjqWLg Part Two: buff.ly/3ZGHAHu #nutrition #MedEd #EDS #HSD #MCAS #NEISvoid #Fibro

SEDSConnective (@sedsconnective) 's Twitter Profile Photo

How long (years) did it take you to get a diagnosis of a type of EDS or HSD ? Maybe you can't ? #SymptomaticHypermobility #EhlersDanlossyndromes #HypermobilitySpectrumDisorders

How long (years) did it take you to get a diagnosis of a type of EDS or HSD ?
Maybe you can't ?
#SymptomaticHypermobility 
#EhlersDanlossyndromes #HypermobilitySpectrumDisorders
OhTWIST.bsky.social now too (@h2ohtwist) 's Twitter Profile Photo

We recommend avoiding Cipro and all fluoroquinolones if you're hypermobile: buff.ly/2rR6TYp #EDS #HSD #Fibro #medicine #fibromyalgia #nurses #doctors #medicine #MedTwitter #MedEd #FOAMed #NEISvoid

We recommend avoiding Cipro and all fluoroquinolones if you're hypermobile: 

buff.ly/2rR6TYp 

#EDS #HSD #Fibro #medicine #fibromyalgia #nurses #doctors #medicine #MedTwitter #MedEd #FOAMed #NEISvoid