From survey to solutions: Tackling diversity and inclusion gaps through an inclusion task force.
As a company, Merck & Co., Inc., Rahway, NJ, USA (hereinafter "MSD"), strives to create an environment of mutual respect, inclusion, and accountability in all areas. However, an internal survey revealed that inclusion scores were notably low within the research unit called Health Economic and Decisi…
Gastrointestinal Manifestations of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders: A Mentored Review.
Hypermobile Ehlers-Danlos Syndrome (hEDS) is a connective tissue disorder that is often diagnosed after diagnostic delays due to reliance on heightened clinical suspicion. Hypermobility spectrum disorders (HSD) bridge the gap between asymptomatic joint hypermobility and hEDS. Due to overlapping feat…
Esophageal Dysmotility and Gastroesophageal Reflux Disease Risk in Hypermobile Ehlers-Danlos Syndrome.
Individuals with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) have an increased burden of foregut gastrointestinal symptoms, specifically dysphagia and reflux symptoms, versus non-hypermobile individuals. The overall aim of this study was to evaluate esophageal…
Kinesiophobia, global health, pain, and bone mineral density in women with hypermobile Ehlers-Danlos syndrome: a prospective cohort study.
Hypermobile Ehlers-Danlos Syndrome (hEDS) is associated with joint hyperflexibility, pain, and connective tissue frailty. Patients are at high risk for fracture due to poor proprioception. This study reports on the mental and physical health, pain, physical activity, and kinesiophobia in patients wi…
Neuropathic involvement in wild-type transthyretin amyloidosis.
Wild-type transthyretin amyloidosis (ATTRwt amyloidosis) has traditionally been considered a purely cardiological condition. However, recent studies suggest that neurological involvement in ATTRwt amyloidosis is more significant than previously believed. We conducted a comprehensive neurological stu…
The lived experience of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders in the United Kingdom: findings from a national cross-sectional survey.
This study explored the lived experiences of individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) in the United Kingdom, focusing on diagnosis, access to care, and impact on daily life. A cross-sectional, mixed-methods online survey was co-developed wi…
Patterns of and Experiences with Dysphagia in People with hypermobile Ehlers Danlos Syndrome (hEDS) with or Without Dysautonomia - A Qualitative Study.
Ehlers Danlos Syndromes (EDS) are hereditary connective tissue disorders. The purpose of this participatory action qualitative research study is to describe experiences of dysphagia in people with hypermobile EDS (hEDS). Ten participants (8 F, 1 M, and 1 nonbinary-assigned F at birth; ages 19-5…
Vascular Abnormalities in Hypermobile Ehlers-Danlos Syndrome: A Retrospective Cohort Study.
Hypermobile Ehlers-Danlos syndrome (hEDS), while generally free from severe vascular complications, may occasionally present with cardiac and vascular abnormalities that warrant specific investigation. While studies have been conducted on the prevalence of cardiac involvement, none have focused…