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Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders - Inspire The Ehlers-Danlos Syndromes and Related Disorders Support Community connects patients, families, friends and caregivers for knowledge, support and inspiration This community is sponsored by the Ehlers-Danlos Society, an Inspire trusted partner
2025 Global Learning Conference - Ehlers-Danlos Syndromes - Inspire Join other individuals and families with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) for up to three days of learning, collaboration, and networking The conference theme is "Teamwork", emphasizing the importance of multidisciplinary collaboration in managing EDS and HSD symptoms and comorbidities
23 and me Col3A1 - Ehlers-Danlos Syndromes - Inspire Hello Getbent, Just be aware that while EDS, Vascular type is caused by a genetic mutation on COL3A1, so are some with EDS, Hypermobility type caused by a different mutation on COL3A1 And then there are also mutations on COL3A1 which are not known to cause any problems at all So having a result that suggests there may be a genetic mutation on COL3A1 does not automatically mean you have VEDS
Steinbergs sign, positive or not and does a boderline . . . - Inspire To be accurately assessed for Hypermobile EDS (hEDS) or other types of EDS and genetic connective tissue disorders, you need to see a Geneticist experienced with these We cannot accurately tell you if you do meet diagnostic criteria or not In Criterion 2, Feature A, a person needs to meet at least 5 out of the 12 criteria to meet that Feature
Atlanta recommendations - Ehlers-Danlos Syndromes - Inspire Be sure to get on the FB GA EDS support group - tons of Atlanta recommendations in the group documents, including several neurologists I went to Nassim Nabavi at Midtown Neurology and loved her - very EDS-informed, as well as thorough and kind
General Discussion about Alcohol with EDs - Inspire General Discussion about Alcohol with EDs General discussion Hello to the brave EDS community, I am very intrigued to hear from the EDS community about people's attitudes and consumption of alcohol Are you comfortable with consuming alcohol at all? Do you think in terms of a 'limit' on alcohol consumption Or are you able to drink freely?
Got my 23andme. What next? - Ehlers-Danlos Syndromes - Inspire Just like EDS, you have to look at expression as well as what other issues they have going on If they have other metabolic issues that can interplay with MTHFR, such as a vWB or other Factor issues, not to mention things like COMT activity, and CBS regulation, then you essentially have a whole other set of things to consider