Ehlers-Danlos News

April 12, 2021April 12, 2021

Rare Dental Lesions Found in Young Girl with EDS

Ehlers-Danlos News

A young girl diagnosed with Ehlers-Danlos syndrome (EDS) exhibited a rare case of so-called odontogenic keratocysts — benign cystic lesions characterized by aggressive growth — in her jaw, according to ... Read more

April 5, 2021April 5, 2021

EDS-related Gene Variants Found to Play Role in Eye Disorder

Ehlers-Danlos News

Genes involved in Ehlers-Danlos syndrome (EDS) appear to play a role in keratoconus (KC) — a thinning of the eye’s cornea. This finding, from a recent study, is the first ... Read more

March 31, 2021March 31, 2021

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Ehlers-Danlos News

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of ... Read more

March 29, 2021March 29, 2021

Healthy Pregnancy, Birth Linked to Genetic Diagnosis of Classic-like EDS

Ehlers-Danlos News

Physicians should determine a patient’s specific type of Ehlers-Danlos syndrome (EDS) by identifying the underlying genetic mutations, as this is needed to best manage possible complications. This conclusion stems from ... Read more

March 22, 2021March 22, 2021

Indigestion Common With Joint Hypermobility Syndrome for Reasons Unknown

Ehlers-Danlos News

Joint hypermobility syndrome, including hypermobile Ehlers–Danlos syndrome (hEDS), is present in a large proportion of people with functional dyspepsia — a common gastrointestinal disorder also known as indigestion without an underlying ... Read more

March 15, 2021March 15, 2021

New Mutation Found in Child with Classical Ehlers-Danlos Syndrome

Ehlers-Danlos News

A new mutation causing classical Ehlers-Danlos syndrome (EDS) has been identified in a child whose parents did not carry the mutation. The mutation is of a type known to cause ... Read more

March 9, 2021March 9, 2021

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

COVID-19 News, Ehlers-Danlos News

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, ... Read more

March 8, 2021March 9, 2021

Autism, ADHD May Be More Common in hEDS Children

Ehlers-Danlos News

A higher frequency of attention-deficit/hyperactivity disorder and autism spectrum disorder was found in children with hypermobile EDS (hEDS) or hypermobility spectrum disorders (HSD), a Swedish study shows. These findings support ... Read more

March 5, 2021March 6, 2021

Certain Complications More Common in Hospitalized EDS Patients

Ehlers-Danlos News

Hospitalized patients with Ehlers-Danlos syndrome (EDS) experience more gastrointestinal (GI), cardiovascular, nervous, and allergic conditions than those without EDS, a recent study has found. The findings suggest physicians should consider ... Read more

February 26, 2021February 26, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

COVID-19 News, Ehlers-Danlos News

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned ... Read more

February 23, 2021February 23, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

COVID-19 News, Ehlers-Danlos News

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more

February 19, 2021February 20, 2021

High Prescription Rates Show GI Symptoms Are Common, Especially in Teens

Ehlers-Danlos News

Prescription claims for medications for gastrointestinal (GI) symptoms — among them heartburn, indigestion, constipation, and diarrhea — are higher among children and adults with Ehlers-Danlos syndrome (EDS) than in people ... Read more

February 18, 2021February 18, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Ehlers-Danlos News

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 12, 2021February 13, 2021

New AHEAD Coalition to Address Pediatric Concerns in EDS, HSD

Ehlers-Danlos News

The Ehlers-Danlos Society is pulling together a coalition aimed at addressing a broad range of pediatric concerns in Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD). Among its focus areas will ... Read more

February 10, 2021February 10, 2021

Pandemic Won’t Stop Rare Disease Day on Feb. 28

COVID-19 News, Ehlers-Danlos News

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more