Top Tweets for #EDSECHOsummit
Two ten hour days running our #EDSECHOSummit taking their toll! SO TIRED! But wow am I inspired, what an incredible few days full of encouraging talks, we really are moving in the right direction ๐๐ป #EhlersDanlosSyndrome #HypermobilitySpectrumDisorders @TheEDSociety #EDS #HSD
Dr. Anne Maitland @asktheallergist presents an abstract 'Immune dysfunction, both mast cell activation disorders, and #primaryimmunedeficiency is common among patients with #hypermobilityspectrumdisorder (HSD) or #hypermobileEhlersDanlos Syndrome (hEDS).' #EDSECHOsummit
Dr. Lawrence Afrin is a leading expert in #mastcellactivationsyndrome and joins us for a lecture on 'Mast Cell Activation and Immunological Concerns in EDS and HSD' including a discussion on the relationship between #mastcells and autonomic symptoms. #EDSECHOsummit
GI symptoms can occur in all EDS subtypes and in HSD. Herinas, out of place organs, and prolapse, as well as functional problems such as changes in the speed of the digestive system (gut motility) are commonly seen. #EDSECHOsummit
Professor Aziz discussed dysautonomia and gastrointestinal issues: fast heart rate on standing (postural tachycardia syndrome, PoTS) is associated with GI symptoms such as nausea, reflux, bloating, constipation, and diarrhea. #EDSECHOsummit
Professor Khullar explains that issues that are commonly faced by those with EDS and HSD include a painful bladder, bleeding, and chronic inflammation, and increased mast cells in the bladder. #EDSECHOsummit
Professor Khullar speaks on 'Pelvic floor and bladder disorders in EDS and HSD' and explains that chronic infection is often seen, yet 90% of urine dipstick tests come back negative despite an infection, and cultures should be grown. #EDSECHOSummit
"Non-Pharmacological measures should be used first in the management of postural orthostatic tachycardia syndrome (PoTS), followed by pharmacological if needed." Professor Mathias #EDSECHOsummit #DysautonomiaAwarenessMonth
"Not initiating proper investigations and treating properly afterward can be devastating for patients with dysautonomias." Professor Mathias #EDSECHOSummit #DysautonomiaAwarenessMonth
Professor Christopher Mathias join us for a presentation on 'Cardiovascular Autonomic Complications in HSD and EDS.' #EDSECHOSummit #DysautonomiaAwarenessMonth
Stephanie Meyer talking basic school accommodations for children with ADHD & hypermobility: "be aware that the activity level and sensory behaviors are not intended to be irritating to anyone, and are a sign that the child is overwhelmed." #EDSECHOSummit #ADHD
Dr. Jessica Eccles @BendyBrain "In our clinic most of the patients we see are #hypermobile." Dr. Eccles describes a case study of how correct diagnosis and management of EDS and dysautonomia was vital in helping her patient #EDSECHOsummit
Dr. Jessica Eccles @BendyBrain presents a case study in our Neurodiversity session on the topic of 'Neurodevelopmental Disorder and Hypermobility.' #EDSECHOSummit #Neurodiversity
We open Day 2 of the #EDSECHOSummit today with a keynote lecture with @jvsimmonds01 on cutting edge research in #physicaltherapy, and how it can be applied to practice for hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD).
And we are live on Day 2 with 316 health professionals attending from 23 countries around the world! 48% of attendees are new attendees to a Society conference. We are so pleased this virtual format is allowing more people to join from around the world #EDSECHOSummit
Day 2 of the @TheEDSociety #EDSECHOSummit - so excited to hear more great speakers on the comorbidities that affect so many in our community. Hopefully with this continued collaboration & commitment to funding research we can get more answers ๐๐ผ #EhlersDanlosSyndrome #EDS #HSD
Congrats! This is an amazing program. @TheEDSociety #EDSECHOsummit #AllTeachAllLearn #MovingKnowledgeNotPeople #EDS @ProjectECHO
We are delighted to be opening with Day 1 of the first EDS ECHO Summit, sharing the latest research and knowledge on EDS, HSD, and comorbidities, in the traditional @ProjectECHOยฎ all-teach all-learn format with nearly 300 health professionals, globally.โ #EDSECHOSUMMIT
Professor Vik Khullar cites that generally, a person will have suffered with incontinence for around 12 years before they go to see a doctor, and will take around 2 years from deciding to see a doctor about these issues, to actually seeing a doctor.ย #EDSECHOSummit
I often times wonder if this is partly why I have a hard time talking some days, especially on the phone. #EDSECHOSummit #EhlersDanlosSyndrome
"Just as you might sublux a shoulder or a knee, the joints that help open, close, and tighten the vocal cords can sublux." Professor Birchall talks about throat problems and care in EDS. #EDSECHOSummit
"Just as you might sublux a shoulder or a knee, the joints that help open, close, and tighten the vocal cords can sublux." Professor Birchall talks about throat problems and care in EDS. #EDSECHOSummit
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