EDNF Becomes the Ehlers-Danlos Society

Strength begins with hope: Ehlers-Danlos National Foundation Forms The Ehlers-Danlos Society As Next Step In The Global Fight Against Under-Diagnosed Genetic Disorder McLean, VA — In an intensifying battle to better understand one of medicine’s most vexing, misunderstood, and potentially dangerous and debilitating genetic disorders, The Ehlers-Danlos National Foundation (EDNF) announced today its evolution into […] View page

Teen thrives despite rare disease

When John and Ingrid McCalmont’s second daughter Michelle was born 27 weeks premature at just 2 pounds, 6 ounces, they were worried about how this would impact their precious baby. Several months later her mother, who had experience as a dental hygienist, had a feeling that more than just her size was problematic. “Very early, […] View page

It’s Our Time: STINA Records Message of Hope for Ehlers-Danlos Awareness

Patients born with Ehlers-Danlos syndrome often fight many for years for proper diagnosis, recognition, and treatment. Most patients wait more than a decade to obtain diagnosis. Their fight can be a difficult, tortuous road. Because of the multisystemic nature of many forms of Ehlers-Danlos, too many patients struggle for over a decade to obtain comprehensive […] View page

Teen Girl And Service Dog Wear Adorable Matching Prom Dresses

It’s not easy living with Ehlers-Danlos syndrome. It’s a genetic defect in the connective tissue of the body. Erin Condrin, an Australian teenager, knows the condition all too well. It causes her joints to dislocate about 20 times a day. She uses a wheelchair to ease the pain, and the one friend who always stays […] View page

15-year-old recovering from heart surgery diagnosed with EDS

At 15-years-old-and in the past few months-his life has been turned upside down. Adam Inzauro is recovering from a vascular surgery of his aorta, being malnourished, and being diagnosed with a rare tissue disorder. He will fight it the rest of his life. “We never knew about it before but now that we know, we […] View page

Brain injury unmasking Ehlers-Danlos syndromes after trauma: the fiber print.

The role of physical trauma in the onset of symptoms in Ehlers-Danlos syndrome (EDS) has never been characterized. We sought to search and describe brain lesions EDS patients also having personal history of physical trauma.… Patients with EDS, hypermobility type, were found to have consistent and specific brain lesions involving white matter tracts. Moreover, the […] View page

Musculocontractural Ehlers-Danlos syndrome and neurocristopathies: dermatan sulfate is required for Xenopus neural crest cells to migrate and adhere to fibronectin

Of all live births with congenital anomalies, approximately one-third exhibit deformities of the head and face. Most craniofacial disorders are associated with defects in a migratory stem and progenitor cell population, which is designated the neural crest (NC). Musculocontractural Ehlers-Danlos syndrome (MCEDS) is a heritable connective tissue disorder with distinct craniofacial features. … We conclude […] View page