Log in to search using one of your social media accounts:

 

Mother with rare Ehlers-Danlos syndrome struggles to cuddle her children because her joints 'pop out'

Emily Comber (pictured with husband, James), 31, from Cornwall, has Ehlers-Danlos syndrome - a genetic condition which means the collagen in her body is too weak.
Source: the Mail online | Health - Category: Consumer Health News Source Type: news

Related Links:

We report the case of a 4-year-old boy with Ehlers-Danlos syndrome undergoing single-ventricle palliation for an unbalanced atrioventricular canal defect. No reports of single-ventricle palliation in the setting of connective tissue disorders exist in the current literature. Unique findings on the patient's preoperative imaging included a disproportionately large neoaortic root and a regurgitant atrioventricular valve, which may foretell the need for future intervention. PMID: 29233360 [PubMed - in process]
Source: The Annals of Thoracic Surgery - Category: Cardiovascular & Thoracic Surgery Authors: Tags: Ann Thorac Surg Source Type: research
Introduction: In adults with Ehlers-Danlos Syndrome (EDS), a group of monogenic disorders affecting connective tissues, obstructive sleep apnea (OSA) is highly prevalent. The prevalence of OSA in children with EDS is unknown.Objectives. The aim of this prospective cross-sectional study was to compare the prevalence of OSA in pediatric EDS patients and healthy controls.Methods: Children with EDS (n=24), age 6 to 18, were recruited from the Children`s Hospital Zurich. 1-to-1 matching to healthy controls according to sex, age, ethnicity, and Z-score BMI was conducted. Participants completed home respiratory polygraphy and que...
Source: European Respiratory Journal - Category: Respiratory Medicine Authors: Tags: Paediatric Respiratory Physiology and Sleep Source Type: research
I have severe Joint Hypermobility Disorder. I dislocated my jaw chewing on a piece of baguette. I walked a couple blocks to the dentist, did the new patient registration, and they advised me to go to A&E [Accident &Emergency]. So my husband picked me up, and four hours later my jaw had been clicked […]
Source: Andrea's Buzzing About: - Category: Disability Authors: Tags: Ehlers-Danlos Syndrome Hypermobility TMJ (Temporomandibular Joint Disorder) Source Type: blogs
Condition:   Ehlers-Danlos Syndrome Intervention:   Device: compression Garment Sponsors:   Hôpital Raymond Poincaré;   Institut National de la Santé Et de la Recherche Médicale, France Not yet recruiting
Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
Condition:   Ehlers-Danlos Syndrome Interventions:   Device: compression Garment;   Device: rehabilitation;   Device: CG+rehabilitation Sponsors:   Hôpital Raymond Poincaré;   Institut National de la Santé Et de la Recherche Médicale, France Not yet recruiting
Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
Condition:   Ehlers-Danlos Syndrome Intervention:   Device: compression Garment Sponsors:   Hôpital Raymond Poincaré;   Institut National de la Santé Et de la Recherche Médicale, France Not yet recruiting
Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
Condition:   Ehlers-Danlos Syndrome Interventions:   Device: compression Garment;   Device: rehabilitation;   Device: CG+rehabilitation Sponsors:   Hôpital Raymond Poincaré;   Institut National de la Santé Et de la Recherche Médicale, France Not yet recruiting
Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
Condition:   Ehlers-Danlos Syndrome Intervention:   Device: compression Garment Sponsors:   Hôpital Raymond Poincaré;   Institut National de la Santé Et de la Recherche Médicale, France Not yet recruiting
Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
Condition:   Ehlers-Danlos Syndrome Interventions:   Device: compression Garment;   Device: rehabilitation;   Device: CG+rehabilitation Sponsors:   Hôpital Raymond Poincaré;   Institut National de la Santé Et de la Recherche Médicale, France Not yet recruiting
Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
Condition:   Ehlers-Danlos Syndrome Intervention:   Device: compression Garment Sponsors:   Hôpital Raymond Poincaré;   Institut National de la Santé Et de la Recherche Médicale, France Not yet recruiting
Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
More News: Children | Ehlers-Danlos Syndrome | Genetics | Health