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#hEDS

1 post1 participant0 posts today
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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!

A person with long brown hair with blonde tips. They are wearing a purple and black hat, rainbow glasses with gold rims and have multicolored metal snakebite piercings. They are smiling. They are wearing a black, purple, and white top.
#intro#yeg#edmonton
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Niamh Garvey

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.

@actuallyautistic

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Belle (she/her)

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”

ehlers-danlos.com/new-research

Screenshot from the article, which reads: Study Overview In this study, researchers examined blood samples from 466 adults, including 94 diagnosed with hEDS and 80 with HSD. The study revealed the presence of a specific 52 kDa fragment of fibronectin in the blood of every individual with hEDS and HSD. This fragment was notably absent in healthy controls, individuals with other types of EDS, and those with various kinds of arthritis. Additionally, a fragment of collagen I was found in all individuals with hEDS and HSD, although this fragment was also present in other conditions. The consistent presence of the 52 kDa fibronectin fragment in individuals with hEDS and HSD suggests a possible common underlying pathophysiology, thus questioning the differentiation between these conditions.
#hypermobility#hEDS#EhlersDanlos
Continued thread
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Emily Johnson

Please share the above research paper and this 2019 #hEDS and #JHS (used interchangeably for #HSD) population paper bmjopen.bmj.com/content/9/11/e

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
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Emily Johnson

2) is just as significant — many #hEDS patients were stripped of #EDS diagnoses and care following the 2017 reclassification

Clinicians assumed #HSD patients were less symptomatic, less severe, in need of less care — this caused major medical trauma and loss of care for patients

Continued thread
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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?

Data from above post, shown as table with colours to emphasise high/low percentages.
#poll#polls#hypermobility
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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!

· 202 people · Closed
#poll#polls#hypermobility
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Tom Kindlon

Transcript finally up for NIH #MECFS Research Roadmap: Lesser Studied Pathologies Webinar
event.roseliassociates.com/me-

Speakers included
V Whittemore/B Pollack/I Ruhoy/P Klinge/A Maitland/J Rehmeyer/L Pace/B Pollack/N Thomas/E von Saltza/R Boneva/E Unger

#CFS #PwME #CCI #EDS #MCAS #MEspine #hEDS @mecfs

1 Lesser Studied Pathologies Webinar - January 5, 2024 Page Introduction 2 - Vicky Whittemore Intro: Research overview of pathologies and comorbidities 4 - Beth Pollack Talk 1: Connective Tissue Disorders, Spinal Conditions, and ME/CFS 9 - Ilene Ruhoy (Prerecorded) Talk 2: Mast Cell Activation Disorders and ME/CFS 31 - Anne Maitland Talk 3: Neurosurgical Conditions in ME/CFS 40 - Julie Rehmeyer Talk 4: Gastrointestinal issues in ME/CFS 44 - Laura Pace Introduction to Reproductive Health Conditions in ME/CFS 55 - Beth Pollack Talk 5: Sex Hormones in ME/CFS 59 - Natalie Thomas Talk 6: Lived Experience 64 - Emelia von Saltza (Prerecorded) Talk 7: Reproductive Health Conditions in ME/CFS 66 - Roumiana Boneva, Elizabeth Unger Panel Discussion 71 Closing Remarks 78 - Beth Pollack, Vicky Whittemore Adjourn
#MyalgicEncephalomyelitis#ChronicFatigueSyndrome#MyalgicE
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Invisiblyillin

This mirrors what I’ve been seeing in the Long Covid support groups. There is a much higher percentage of hypermobile Long Haulers than would be expected. Hypermobile persons also seem to report significant/increased fatigue and pain more frequently.

bmjpublichealth.bmj.com/conten

Long Covid Sucks!

#Disability, #LongCovid, #Hypermobility, #hEDS, #ChronicIllnesses, #covidsucks, #MaskUp

BMJ Public HealthIs joint hypermobility linked to self-reported non-recovery from COVID-19? Case–control evidence from the British COVID Symptom Study BiobankObjectives This study sought to explore whether generalised joint hypermobility (GJH, a common marker of variant connective tissue) was a risk factor for self-reported non-recovery from COVID-19 infection.Design Prospective observational study.Setting COVID Symptom Study Biobank ( https://cssbiobank.com/) UKParticipants Participants were surveyed in August 2022. 3064 (81.4%) reported at least one infection with COVID-19. These individuals self-reported on recovery and completed a self-report questionnaire to detect GJH (Hakim and Grahame 5-part questionnaire, 5PQ).Main outcome measures The primary outcome was the presence of self-reported non-recovery from COVID-19 infection at the time of the survey. Additional outcomes included scores on 5PQ and self-reported fatigue level (Chalder Fatigue Scale).Results The presence of GJH was not specifically associated with reported COVID-19 infection risk per se. However, it was significantly associated with non-recovery from COVID-19 (OR 1.43 (95% CI 1.20 to 1.70)). This association remained after sequential models adjusting for age, sex, ethnic group, education level and index of multiple deprivation (OR 1.33 (95% CI 1.10 to 1.61)) and further adjustment for vaccination status and number of vaccinations (OR 1.33 (95% CI 1.10 to 1.60)). Additionally, including in a model adjusting for all covariates, hypermobility significantly predicted higher fatigue levels (B=0.95, SE=0.25, t=3.77, SE, p=0.002). Fatigue levels mediated the link between GJH and non-recovery from COVID-19 (estimate of indirect effect=0.18, 95% bootstrapped CI 0.08 to 0.29).Conclusions Individuals with GJH were approximately 30% more likely not to have recovered fully from COVID-19 infection at the time of the questionnaire, and this predicted the fatigue level. This observation is clinically important through its potential impact for understanding and identifying sub-phenotypes of long COVID for screening and personalised targeted interventions. More generally, greater awareness of GJH and its extra-articular associations is needed for effective patient stratification and implementation of personalised medicine.
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