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Mashup Score: 2The Healing Power of Movement: Lena’s Rare Disease Story - National Organization for Rare Disorders - 11 month(s) ago
By Lena Z.
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 0Home - PoTS UK - 1 year(s) ago
Stories about PoTS Some of our members have shared their experience of PoTS. Their stories describe how their PoTs began and their road to a diagnosis, and we hope that sharing them will help others to find the best way forward when confronted with the difficulties that PoTS presents. …
Source: PoTS UKCategories: Latest Headlines, RheumatologyTweet-
Postural Tachycardia Syndrome (PoTS) Associated with ➡️#EhlersDanlosSyndrome ➡️#Hypermobility spectrum disorder ➡️Viral infection #COVID19, #EBV, ME/#CFS ➡️Autoimmune conditions ➡️Growth/puberty in children 👉🏽https://t.co/y0Ub5jnYIU via @UKPoTS https://t.co/rIStzixzxC
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Mashup Score: 2
“I did not get accurately diagnosed until the age of 54 with a condition one is born with.”
Source: The MightyCategories: Latest Headlines, RheumatologyTweet-
Many of us living with EDS have so frequently been told we “look fine” and there is nothing to do to help us." -Ellen Lenox Smith The Mighty Read more of this article below: https://t.co/NK7Petlya5 #eds #ehlersdanlossyndrome https://t.co/oZcNpKza20
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Mashup Score: 4Narcolepsy and Orthostatic Intolerance in an Adult With Ehlers-Danlos Syndrome | Psychiatrist.com - 2 year(s) ago
In this report, the authors present a case of narcolepsy diagnosed in a patient with Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome.
Source: Psychiatrist.comCategories: Latest Headlines, PsychiatryTweet-
The first known reported case of #narcolepsy and #dysautonomia diagnosed simultaneously in a patient with #EDS. https://t.co/GRklDmUSyN #EhlersDanlosSyndrome #CaseReport #MedEd https://t.co/L2RxQSc9Rh
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Mashup Score: 8
Background Musculocontractural Ehlers−Danlos syndrome is caused by biallelic loss-of-function variants in CHST14 (mcEDS- CHST14 ) or DSE (mcEDS- DSE ). Although 48 patients in 33 families with mcEDS- CHST14 have been reported, the spectrum of pathogenic variants, accurate prevalence of various manifestations and detailed natural history have not been systematically investigated. Methods We…
Source: Journal of Medical GeneticsCategories: General Medicine Journals and Societies, Latest HeadlinesTweet-
Musculocontractural #EhlersDanlosSyndrome - What is it? What are the #genetic causes? 🦓 1st international collaboration. #OpenAccess https://t.co/Mfr6bdQMqn @EDS_Today @TheEDSociety @ugentbiblio #Genetics #Genomics #MedicalGenetics #ClinicalGenetics #Research #RareDisease https://t.co/1N20JqOTcy
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Mashup Score: 6Diagnosis with rare hidden disability Ehlers-Danlos Syndrome motivates regional manager Emma to take up running - United Response - 3 year(s) ago
Emma has been working for United Response for 12 years. Having recently been diagnosed with Ehlers-Danlos Syndrome, she’s found a new love for running.
Source: United ResponseCategories: Latest Headlines, RheumatologyTweet-
RT @DrAiLynTan: How #running & #parkrun helped Emma who has #EhlersDanlosSyndrome improve pain & #mentalhealth 👉🏽https://t.co/lReAGZ4srd v…
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Mashup Score: 2Diagnosis with rare hidden disability Ehlers-Danlos Syndrome motivates regional manager Emma to take up running - United Response - 3 year(s) ago
Emma has been working for United Response for 12 years. Having recently been diagnosed with Ehlers-Danlos Syndrome, she’s found a new love for running.
Source: United ResponseCategories: Latest Headlines, RheumatologyTweet-
How #running & #parkrun helped Emma who has #EhlersDanlosSyndrome improve pain & #mentalhealth 👉🏽https://t.co/lReAGZ4srd via @unitedresponse #hypermobility #ukrunchat #physicalactivity #exercise https://t.co/ZenVT2NLgU
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Mashup Score: 0Mind the gaps: therapists’ experiences of managing symptomatic hypermobility in Scotland - 3 year(s) ago
AbstractObjectives. To ascertain OT and PT experiences of managing Hypermobility Spectrum Disorders (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) patients
Source: OUP AcademicCategories: Latest Headlines, RheumatologyTweet-
There's unmet need & discrepancy in service provision for #Hypermobility #EhlersDanlosSyndrome patients in #Scotland ➡️There's #occupationaltherapy & #physiotherapy expertise ➡️Specialist centre would be valuable ➡️More research required 👉🏽https://t.co/IfSL0I6CAH Via @RheumJnl https://t.co/NcpeBpRKlb
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Mashup Score: 0GI, cardiovascular, autonomic, allergic symptoms more prevalent in Ehlers-Danlos syndrome - 3 year(s) ago
Patients with Ehlers-Danlos syndrome experience significantly more prevalent gastrointestinal, cardiovascular, autonomic and allergic symptoms than those in the hospital without the disease, according to data published in Rheumatology.“Previous studies suggest associations between EDS and gastrointestinal, cardiovascular, immune, and autonomic nervous system dysfunction, but no large
Source: www.healio.comCategories: Latest Headlines, RheumatologyTweet-
“This large case-control study of hospitalized patients determined that a diagnosis of #EhlersDanlosSyndrome is associated with a higher prevalence of gastrointestinal, cardiovascular, autonomic, and allergic manifestations...” https://t.co/CcsC8cbrvC
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Mashup Score: 0GI, cardiovascular, autonomic, allergic symptoms more prevalent in Ehlers-Danlos syndrome - 3 year(s) ago
Patients with Ehlers-Danlos syndrome experience significantly more prevalent gastrointestinal, cardiovascular, autonomic and allergic symptoms than those in the hospital without the disease, according to data published in Rheumatology.“Previous studies suggest associations between EDS and gastrointestinal, cardiovascular, immune, and autonomic nervous system dysfunction, but no large
Source: www.healio.comCategories: Latest Headlines, RheumatologyTweet-
GI, cardiovascular, autonomic, allergic symptoms are more prevalent in #EhlersDanlosSyndrome https://t.co/tfSdoU1IbH https://t.co/RaYn8WZcvV
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In today’s community story, Lena, a patient with #MSK and #hEDS, shares her journey to these #RareDisease diagnoses and describes how she became a Pilates instructor to help others with #EhlersDanlosSyndrome benefit from movement in their lives. Read: https://t.co/dflpZvU0Hj https://t.co/vy5At1ETJn