Woman, 33, Dies of Genetic Disorder a Doctor Said She Was Faking
Stephanie Aston, 33, died at her New Zealand home on September 1 after a public battle with Ehlers-Danlos Syndrome (EDS) — […]
Category: EDS News
CANNABIS & EHLERS-DANLOS SYNDROME
Medical Grade Braces – Worldwide FREE shipping Flexibility is a physical state many of us strive for. Many times, […]
A future in Uganda where kids with rare diseases can play and grow
Daniella Akellot’s research on gluteal fibrosis, a condition that limits the amount of movement in sufferers’ hips, has contributed to […]
Operation Upright
A fundraiser established by a Daniel Island teen to bring an upright MRI machine to the Medical University of South […]
Taking the stigma out of disability
It wasn’t until Daniella Akellot was 28 years old that she found a name for the invisible thing that she […]
International Day of People with Disability
I’ve injured myself so many times it is hard not to think of myself as broken. It’s more accurate to […]
Researchers report a new genetic cause for infantile fractures
An intrauterine fracture is a rare finding during routine prenatal imaging. This condition can be due to maternal trauma, genetic […]
Ehlers-Danlos Syndrome fight continues for these families
Rhode Island resident Ellen Lenox Smith is brave. She has undergone 26 surgeries, had nine catatonic episodes in which she couldn’t walk, […]
“I am never not in some type of pain.” What it’s really like living with Ehlers-Danlos syndrome
I live with chronic pain. I live with the heritable Connective Tissue Disorder, Ehlers-Danlos Syndrome, or EDS for short. I had […]
If you live with one of several chronic illnesses, a new study needs you
May has been Mental Health Awareness Month. It’s also been awareness month for a number of physical conditions, diseases and illnesses – at least four of them in […]