November 21, 2019November 19, 2019
Taking Time to Recharge
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
Summer and fall have been a nonstop whirlwind. A few weeks after graduation (I work as a college counselor ... Read more
November 21, 2019November 21, 2019
Study Finds Shoulder Abnormalities in People with Hypermobile EDS
News
People with hypermobile Ehlers-Danlos syndrome (hEDS) have larger spaces in the shoulder joint than those without the condition, and ... Read more
November 15, 2019November 18, 2019
Avoiding Contact Sports/High-impact Activities When You Have EDS
Health Insights
Ehlers-Danlos syndrome (EDS) refers to a group of rare diseases that affect the connective tissues that give structure to ... Read more
November 14, 2019November 12, 2019
Will Safety Vest Draw Attention to My EDS?
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
In the equestrian sport of eventing, we use a lot of gear. One piece of that puzzle is the ... Read more
November 14, 2019November 14, 2019
Nerve Root Blocks May Pose Risk of CSF ‘Leaks’ in EDS Patients, Case Study Warns
News
A person with Ehlers-Danlos syndrome (EDS), during the course of a routine nerve root block procedure, developed a ‘leak’ ... Read more
November 13, 2019
Rare Disease Film Festival Highlights Patient and Researcher Unity
News
Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing ... Read more
November 8, 2019
Individualized Education Plans for Children with EDS
Health Insights
Ehlers-Danlos syndrome (EDS), a group of genetic disorders that affect connective tissue, has symptoms that can range from mild to ... Read more
November 7, 2019November 7, 2019
Penn State Award Targets Doctors of Ehlers-Danlos Patients Without Specialty in This Rare Disease
News
The Penn State Clinical and Translational Science Institute is funding seven new projects through its Bridges to Translation pilot ... Read more
November 7, 2019November 5, 2019
Celebrities Share Their EDS Battles and Help to Spread Awareness
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
Recently, Ehlers-Danlos syndrome (EDS) made news headlines. That doesn’t happen often. Actress Lena Dunham announced that she has EDS ... Read more
November 4, 2019October 31, 2019
Acting Up, Ehlers-Danlos Style
Columns, Unbreakable - a Column by Kimberly Stark Horn
A few months ago, our community’s theater company held auditions for two productions. At the suggestion of someone whose ... Read more
October 31, 2019October 31, 2019
Routine Heart Tests Not Needed for Hypermobile EDS Patients Unless Cardiac Problems in Family, Study Suggests
News
Routine heart tests and echocardiography — a non-invasive test that uses sound waves to create moving pictures of the heart — ... Read more
October 31, 2019October 29, 2019
I’ve Found Some Success with a New Side Road
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
I’ve previously discussed how having Ehlers-Danlos syndrome (EDS) means that I often have to take side roads to reach ... Read more

November 21, 2019November 19, 2019

Taking Time to Recharge

Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

Summer and fall have been a nonstop whirlwind. A few weeks after graduation (I work as a college counselor at a private high school), the owner of the farm ... Read more

November 21, 2019November 21, 2019

Study Finds Shoulder Abnormalities in People with Hypermobile EDS

News

People with hypermobile Ehlers-Danlos syndrome (hEDS) have larger spaces in the shoulder joint than those without the condition, and this anatomical difference may help to explain their shoulder pain, ... Read more

November 15, 2019November 18, 2019

Avoiding Contact Sports/High-impact Activities When You Have EDS

Health Insights

Ehlers-Danlos syndrome (EDS) refers to a group of rare diseases that affect the connective tissues that give structure to the body’s joints, blood vessels, skin, organs and tissues. Although ... Read more

November 14, 2019November 12, 2019

Will Safety Vest Draw Attention to My EDS?

Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

In the equestrian sport of eventing, we use a lot of gear. One piece of that puzzle is the safety gear we wear, particularly in the cross-country phase, where ... Read more

November 14, 2019November 14, 2019

Nerve Root Blocks May Pose Risk of CSF ‘Leaks’ in EDS Patients, Case Study Warns

News

A person with Ehlers-Danlos syndrome (EDS), during the course of a routine nerve root block procedure, developed a ‘leak’ of the fluid that normally surrounds the brain and spinal ... Read more

November 13, 2019

Rare Disease Film Festival Highlights Patient and Researcher Unity

News

Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing oxygen tanks this Nov. 9 and 10 in San Francisco. ... Read more

November 8, 2019

Individualized Education Plans for Children with EDS

Health Insights

Ehlers-Danlos syndrome (EDS), a group of genetic disorders that affect connective tissue, has symptoms that can range from mild to severe. Depending on the type of EDS a child has ... Read more

November 7, 2019November 7, 2019

Penn State Award Targets Doctors of Ehlers-Danlos Patients Without Specialty in This Rare Disease

News

The Penn State Clinical and Translational Science Institute is funding seven new projects through its Bridges to Translation pilot grant program. One project aims to improve understanding of Ehlers-Danlos ... Read more

November 7, 2019November 5, 2019

Celebrities Share Their EDS Battles and Help to Spread Awareness

Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

Recently, Ehlers-Danlos syndrome (EDS) made news headlines. That doesn’t happen often. Actress Lena Dunham announced that she has EDS in response to questions about a photo of her using ... Read more

November 4, 2019October 31, 2019

Acting Up, Ehlers-Danlos Style

Columns, Unbreakable - a Column by Kimberly Stark Horn

A few months ago, our community’s theater company held auditions for two productions. At the suggestion of someone whose opinions I trust, I contacted the theater company and arranged ... Read more