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COVID-19 VACCINES
The Ehlers-Danlos Society has received a number of inquiries as to whether people with EDS or HSD should have a COVID-19 vaccination. We are not aware of any studies that have looked specifically at EDS or HSD. Many with EDS or HSD have chronic and complex health concerns that potentially could worsen with COVID-19 infection. EDS & HSD AND COVID-19 One study ( Carfi A et al, 2020) of 143 patients hospitalized with COVID-19 infection found that 32% continued to experience one or two symptoms 60 days after the onset of COVID-19, and 55% had three or more symptoms. These symptoms included fatigue (53%), difficulty in breathing (43%), joint pain (27%), and chest pain (22%). HEALTHCARE PROFESSIONALS DIRECTORY If you are a medical professional and wish to be listed here, please: DISCLAIMER. The Ehlers-Danlos Society acknowledges how hard it is to find an EDS-friendly specialist across various disciplines globally, so to further our commitment to your access to management and care we have created this list that is populated by professionals submitting their information to our site.DIAGNOSTIC CRITERIA
Diagnostic Criteria. Please use the links below to navigate to the page of your choice. Criteria & Diagnostic Pathway update Feb 2021. 2017 EDS International Classification. 2017 EDS Internation Classification for Non-Experts. EDS Diagnostic 2017.HEDGE STUDY
HEDGE Update - February 2021. The Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) is an ongoing study that will obtain whole-genome sequences for 1000 people with hypermobile Ehlers-Danlos syndrome (hEDS) under the 2017 criteria, and seek to establish underlying genetic causation. Of the 14 subtypes of EDS, only the hypermobiletype does
PROJECT ECHO
In April 2019, The Ehlers-Danlos Society started the EDS ECHO® program with two hubs, one at Indiana University Health, Indianapolis, IN, USA, and the other at The Royal Society of Medicine, London, UK. Over time, our aim is to open hubs all over the world. One of our greatest assets is the International Consortium, a group ofindependent
OB/GYN AND EDS/HDS
Obstetrics • Physiologic/hormonal changes • Increased levels of relaxinhormone, can exacerbate pre-existing joint laxity and pain in hEDS. • Three times more likely to require treatment forpelvic girdle pain and instabilitythan the general population. LIVING WITH ADHD AND EDS / HSD EDS Conference Edinburgh 2 November 2019 All rights reserved. 3 Linking ADHD and EDS /HSD (2) Baeza-Velasco, Sinibaldi, Castori2018 Linking ADHD and EDS /HSD (2) UROGYNECOLOGY IN EDS Urogynecology in EDS Joan L. Blomquist, MD Greater Baltimore MedicalCenter August 2018
HOME | THE EHLERS DANLOS SOCIETY : THE EHLERS DANLOS SOCIETYABOUT USEDS & HSD INFOCOMMUNITY RESOURCESGET INVOLVEDPROFESSIONALSRESEARCH The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions.COVID-19 VACCINES
The Ehlers-Danlos Society has received a number of inquiries as to whether people with EDS or HSD should have a COVID-19 vaccination. We are not aware of any studies that have looked specifically at EDS or HSD. Many with EDS or HSD have chronic and complex health concerns that potentially could worsen with COVID-19 infection. EDS & HSD AND COVID-19 One study ( Carfi A et al, 2020) of 143 patients hospitalized with COVID-19 infection found that 32% continued to experience one or two symptoms 60 days after the onset of COVID-19, and 55% had three or more symptoms. These symptoms included fatigue (53%), difficulty in breathing (43%), joint pain (27%), and chest pain (22%). HEALTHCARE PROFESSIONALS DIRECTORY If you are a medical professional and wish to be listed here, please: DISCLAIMER. The Ehlers-Danlos Society acknowledges how hard it is to find an EDS-friendly specialist across various disciplines globally, so to further our commitment to your access to management and care we have created this list that is populated by professionals submitting their information to our site.DIAGNOSTIC CRITERIA
Diagnostic Criteria. Please use the links below to navigate to the page of your choice. Criteria & Diagnostic Pathway update Feb 2021. 2017 EDS International Classification. 2017 EDS Internation Classification for Non-Experts. EDS Diagnostic 2017.HEDGE STUDY
HEDGE Update - February 2021. The Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) is an ongoing study that will obtain whole-genome sequences for 1000 people with hypermobile Ehlers-Danlos syndrome (hEDS) under the 2017 criteria, and seek to establish underlying genetic causation. Of the 14 subtypes of EDS, only the hypermobiletype does
PROJECT ECHO
In April 2019, The Ehlers-Danlos Society started the EDS ECHO® program with two hubs, one at Indiana University Health, Indianapolis, IN, USA, and the other at The Royal Society of Medicine, London, UK. Over time, our aim is to open hubs all over the world. One of our greatest assets is the International Consortium, a group ofindependent
OB/GYN AND EDS/HDS
Obstetrics • Physiologic/hormonal changes • Increased levels of relaxinhormone, can exacerbate pre-existing joint laxity and pain in hEDS. • Three times more likely to require treatment forpelvic girdle pain and instabilitythan the general population. LIVING WITH ADHD AND EDS / HSD EDS Conference Edinburgh 2 November 2019 All rights reserved. 3 Linking ADHD and EDS /HSD (2) Baeza-Velasco, Sinibaldi, Castori2018 Linking ADHD and EDS /HSD (2) UROGYNECOLOGY IN EDS Urogynecology in EDS Joan L. Blomquist, MD Greater Baltimore MedicalCenter August 2018
WHAT ARE THE EHLERS-DANLOS SYNDROMES? The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissueproteins.
HEALTHCARE PROFESSIONALS DIRECTORY If you are a medical professional and wish to be listed here, please: DISCLAIMER. The Ehlers-Danlos Society acknowledges how hard it is to find an EDS-friendly specialist across various disciplines globally, so to further our commitment to your access to management and care we have created this list that is populated by professionals submitting their information to our site.DIAGNOSTIC CRITERIA
Diagnostic Criteria. Please use the links below to navigate to the page of your choice. Criteria & Diagnostic Pathway update Feb 2021. 2017 EDS International Classification. 2017 EDS Internation Classification for Non-Experts. EDS Diagnostic 2017. VASCULAR EHLERS-DANLOS SYNDROME (VEDS) Vascular Ehlers-Danlos syndrome (vEDS, VEDS, previously known as EDS type IV) is an uncommon, dominantly inherited, genetic connective tissue disorder. Vascular EDS is particularly serious because of the risk for spontaneous arterial or organ rupture. Incidence and Mechanism. Vascular EDS is estimated to occur between 1 in 50,000individuals to
PAIN MANAGEMENT IN THE EHLERS-DANLOS SYNDROMES (FOR NON Pradeep Chopra, Brad Tinkle, Claude Hamonet, Isabelle Brock, Anne Gompel, Antonio Bulbena, and Clair Francomano, adapted by Benjamin Guscott. Long-term (chronic) pain in the Ehlers-Danlos syndromes (EDS) appears early, is common, and may be severe. ORTHOPEDIC MANAGEMENT OF THE EHLERS-DANLOS SYNDROMES (FOR William B. Ericson Jr. and Roger Wolman, adapted by Benjamin Guscott. The role of orthopedic surgery in the Ehlers-Danlos syndromes is controversial and difficult to discern from available medicalliterature.
ORAL AND MANDIBULAR MANIFESTATIONS IN THE EHLERS-DANLOS This article is adapted from: Mitakides J, Tinkle BT. 2017. Oral and mandibular manifestations in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:220–225.MY BLADDER JOURNEY
“Hi, I’m @uniquely_jeantique and for Urology Awareness Month I’m going to tell you a bit about my bladder journey! I have hEDS and bladder complications are one of the many comorbidities I struggle with, but for years I was told I “just” had interstitial cystitis and was dismissed by doctors who didn’t take any of my symptomsseriously.
DIAGNOSTIC CRITERIA FOR HYPERMOBILE EHLERS-DANLOS SYNDROME CRITERION 1 – Generalized Joint Hypermobility One of the following selected: ¨ ≥6 pre-pubertal children and adolescents LIVING WITH ADHD AND EDS / HSD EDS Conference Edinburgh 2 November 2019 All rights reserved. 3 Linking ADHD and EDS /HSD (2) Baeza-Velasco, Sinibaldi, Castori2018 Linking ADHD and EDS /HSD (2) HOME | THE EHLERS DANLOS SOCIETY : THE EHLERS DANLOS SOCIETYABOUT USEDS & HSD INFOCOMMUNITY RESOURCESGET INVOLVEDPROFESSIONALSRESEARCH The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions.COVID-19 VACCINES
The Ehlers-Danlos Society has received a number of inquiries as to whether people with EDS or HSD should have a COVID-19 vaccination. We are not aware of any studies that have looked specifically at EDS or HSD. Many with EDS or HSD have chronic and complex health concerns that potentially could worsen with COVID-19 infection. EDS & HSD AND COVID-19 One study ( Carfi A et al, 2020) of 143 patients hospitalized with COVID-19 infection found that 32% continued to experience one or two symptoms 60 days after the onset of COVID-19, and 55% had three or more symptoms. These symptoms included fatigue (53%), difficulty in breathing (43%), joint pain (27%), and chest pain (22%). HEALTHCARE PROFESSIONALS DIRECTORY If you are a medical professional and wish to be listed here, please: DISCLAIMER. The Ehlers-Danlos Society acknowledges how hard it is to find an EDS-friendly specialist across various disciplines globally, so to further our commitment to your access to management and care we have created this list that is populated by professionals submitting their information to our site.DIAGNOSTIC CRITERIA
Diagnostic Criteria. Please use the links below to navigate to the page of your choice. Criteria & Diagnostic Pathway update Feb 2021. 2017 EDS International Classification. 2017 EDS Internation Classification for Non-Experts. EDS Diagnostic 2017.HEDGE STUDY
HEDGE Update - February 2021. The Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) is an ongoing study that will obtain whole-genome sequences for 1000 people with hypermobile Ehlers-Danlos syndrome (hEDS) under the 2017 criteria, and seek to establish underlying genetic causation. Of the 14 subtypes of EDS, only the hypermobiletype does
PROJECT ECHO
In April 2019, The Ehlers-Danlos Society started the EDS ECHO® program with two hubs, one at Indiana University Health, Indianapolis, IN, USA, and the other at The Royal Society of Medicine, London, UK. Over time, our aim is to open hubs all over the world. One of our greatest assets is the International Consortium, a group ofindependent
OB/GYN AND EDS/HDS
Obstetrics • Physiologic/hormonal changes • Increased levels of relaxinhormone, can exacerbate pre-existing joint laxity and pain in hEDS. • Three times more likely to require treatment forpelvic girdle pain and instabilitythan the general population. LIVING WITH ADHD AND EDS / HSD EDS Conference Edinburgh 2 November 2019 All rights reserved. 3 Linking ADHD and EDS /HSD (2) Baeza-Velasco, Sinibaldi, Castori2018 Linking ADHD and EDS /HSD (2) UROGYNECOLOGY IN EDS Urogynecology in EDS Joan L. Blomquist, MD Greater Baltimore MedicalCenter August 2018
HOME | THE EHLERS DANLOS SOCIETY : THE EHLERS DANLOS SOCIETYABOUT USEDS & HSD INFOCOMMUNITY RESOURCESGET INVOLVEDPROFESSIONALSRESEARCH The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions.COVID-19 VACCINES
The Ehlers-Danlos Society has received a number of inquiries as to whether people with EDS or HSD should have a COVID-19 vaccination. We are not aware of any studies that have looked specifically at EDS or HSD. Many with EDS or HSD have chronic and complex health concerns that potentially could worsen with COVID-19 infection. EDS & HSD AND COVID-19 One study ( Carfi A et al, 2020) of 143 patients hospitalized with COVID-19 infection found that 32% continued to experience one or two symptoms 60 days after the onset of COVID-19, and 55% had three or more symptoms. These symptoms included fatigue (53%), difficulty in breathing (43%), joint pain (27%), and chest pain (22%). HEALTHCARE PROFESSIONALS DIRECTORY If you are a medical professional and wish to be listed here, please: DISCLAIMER. The Ehlers-Danlos Society acknowledges how hard it is to find an EDS-friendly specialist across various disciplines globally, so to further our commitment to your access to management and care we have created this list that is populated by professionals submitting their information to our site.DIAGNOSTIC CRITERIA
Diagnostic Criteria. Please use the links below to navigate to the page of your choice. Criteria & Diagnostic Pathway update Feb 2021. 2017 EDS International Classification. 2017 EDS Internation Classification for Non-Experts. EDS Diagnostic 2017.HEDGE STUDY
HEDGE Update - February 2021. The Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) is an ongoing study that will obtain whole-genome sequences for 1000 people with hypermobile Ehlers-Danlos syndrome (hEDS) under the 2017 criteria, and seek to establish underlying genetic causation. Of the 14 subtypes of EDS, only the hypermobiletype does
PROJECT ECHO
In April 2019, The Ehlers-Danlos Society started the EDS ECHO® program with two hubs, one at Indiana University Health, Indianapolis, IN, USA, and the other at The Royal Society of Medicine, London, UK. Over time, our aim is to open hubs all over the world. One of our greatest assets is the International Consortium, a group ofindependent
OB/GYN AND EDS/HDS
Obstetrics • Physiologic/hormonal changes • Increased levels of relaxinhormone, can exacerbate pre-existing joint laxity and pain in hEDS. • Three times more likely to require treatment forpelvic girdle pain and instabilitythan the general population. LIVING WITH ADHD AND EDS / HSD EDS Conference Edinburgh 2 November 2019 All rights reserved. 3 Linking ADHD and EDS /HSD (2) Baeza-Velasco, Sinibaldi, Castori2018 Linking ADHD and EDS /HSD (2) UROGYNECOLOGY IN EDS Urogynecology in EDS Joan L. Blomquist, MD Greater Baltimore MedicalCenter August 2018
WHAT ARE THE EHLERS-DANLOS SYNDROMES? The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissueproteins.
HEALTHCARE PROFESSIONALS DIRECTORY If you are a medical professional and wish to be listed here, please: DISCLAIMER. The Ehlers-Danlos Society acknowledges how hard it is to find an EDS-friendly specialist across various disciplines globally, so to further our commitment to your access to management and care we have created this list that is populated by professionals submitting their information to our site.DIAGNOSTIC CRITERIA
Diagnostic Criteria. Please use the links below to navigate to the page of your choice. Criteria & Diagnostic Pathway update Feb 2021. 2017 EDS International Classification. 2017 EDS Internation Classification for Non-Experts. EDS Diagnostic 2017. VASCULAR EHLERS-DANLOS SYNDROME (VEDS) Vascular Ehlers-Danlos syndrome (vEDS, VEDS, previously known as EDS type IV) is an uncommon, dominantly inherited, genetic connective tissue disorder. Vascular EDS is particularly serious because of the risk for spontaneous arterial or organ rupture. Incidence and Mechanism. Vascular EDS is estimated to occur between 1 in 50,000individuals to
PAIN MANAGEMENT IN THE EHLERS-DANLOS SYNDROMES (FOR NON Pradeep Chopra, Brad Tinkle, Claude Hamonet, Isabelle Brock, Anne Gompel, Antonio Bulbena, and Clair Francomano, adapted by Benjamin Guscott. Long-term (chronic) pain in the Ehlers-Danlos syndromes (EDS) appears early, is common, and may be severe. ORTHOPEDIC MANAGEMENT OF THE EHLERS-DANLOS SYNDROMES (FOR William B. Ericson Jr. and Roger Wolman, adapted by Benjamin Guscott. The role of orthopedic surgery in the Ehlers-Danlos syndromes is controversial and difficult to discern from available medicalliterature.
ORAL AND MANDIBULAR MANIFESTATIONS IN THE EHLERS-DANLOS This article is adapted from: Mitakides J, Tinkle BT. 2017. Oral and mandibular manifestations in the Ehlers-Danlos syndromes. Am J Med Genet Part C Semin Med Genet 175C:220–225.MY BLADDER JOURNEY
“Hi, I’m @uniquely_jeantique and for Urology Awareness Month I’m going to tell you a bit about my bladder journey! I have hEDS and bladder complications are one of the many comorbidities I struggle with, but for years I was told I “just” had interstitial cystitis and was dismissed by doctors who didn’t take any of my symptomsseriously.
DIAGNOSTIC CRITERIA FOR HYPERMOBILE EHLERS-DANLOS SYNDROME CRITERION 1 – Generalized Joint Hypermobility One of the following selected: ¨ ≥6 pre-pubertal children and adolescents LIVING WITH ADHD AND EDS / HSD EDS Conference Edinburgh 2 November 2019 All rights reserved. 3 Linking ADHD and EDS /HSD (2) Baeza-Velasco, Sinibaldi, Castori2018 Linking ADHD and EDS /HSD (2)Donate Now!
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