‘Grey’s Anatomy’ episode based on Arroyo Grande teen’s rare illness

Olivia Herzoff, 19, has Ehlers-Danlos syndrome, a rare connective tissue disorder that gives her constant pain and a range of related medical issues. An Oct. 13 episode of the popular medical drama “Grey’s Anatomy” featured a character with EDS modeled after Herzoff. Kaytlyn Leslie The Tribune Her bedroom, where Olivia Herzoff spends most of her […] View page

The Ehlers-Danlos Society Partners with The Mighty

The Ehlers Danlos Society is thrilled to announce a new partnership that will bring our knowledge and resources in front of The Mighty‘s wide-reaching, global readership. With a growing home page on The Mighty, The Ehlers-Danlos Society will now appear on many stories on the site, allowing us to get many more people involved with […] View page

Why and How to Care about Rare Diseases

Those fortunate enough to bear a relatively blank medical record don’t consider the experiences of people with rare diseases until it affects them directly in some way. Rare diseases is a subject that deserves much more attention than media and common knowledge gives it, as these diseases have reached many more people than commonly thought. […] View page

My Social Anxiety Was Caused by Something Much More Serious

Beth Grundfest-Frigeri, a 32-year-old resident of Queens, New York, had a feeling there was something wrong with her as far back as she can remember. As a child, she watched with dismay while other young kids did simple tasks with ease — tying their shoelaces, buttoning shirts. “I just physically couldn’t do it,” she recalls. […] View page

Woman who dislocates limbs every day says she is in constant pain

A disability awareness campaigner from Northamptonshire whose limbs have been dislocating everyday since she was thirteen says she is in constant pain. 29-year-old Sarah Alexander from Wollaston has a genetic condition called Ehlers-Danlos Syndrome Type 3, which means her body over-stretches. Now she’s trying to raise £5,000 to buy a special motorised wheelchair that will […] View page

Area family struggles with Ehlers-Danlos

“My calendar, it probably looks like everyone else’s, only it’s not for sports,” Carol Schmitz said, displaying her schedule of medical and therapy appointments to help her children and herself battle a disabling disorder. During a recent three-day stretch, for example, the family had five medical appointments, typically trips to Milwaukee and Green Bay. And […] View page

Welwyn Garden City zebra crossing plan ‘denies disabled access’

A 67-year-old disabled woman from Valley Road, Welwyn Garden City, has objected to plans to build a pedestrian crossing outside her home. The crossing is being constructed after a successful campaign from parents of Ashcroft School pupils, who were concerned about cars speeding down the road and endangering children walking to and from school. Laura […] View page