January 16, 2020January 16, 2020
Smaller Bone Size May Explain Greater Risk of Fractures in EDS Patients, Study Finds
News
Women with hypermobile Ehlers-Danlos syndrome have a smaller cortical bone — the outer part of the bone, essential for ... Read more
January 16, 2020January 14, 2020
Getting Back into the Swing of Things
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
One of the great things about working at a school is the time I get off. As someone with ... Read more
January 13, 2020January 9, 2020
Here’s How I Made the Holiday Season More Enjoyable
Columns, Unbreakable - a Column by Kimberly Stark Horn
Usually, negative feelings are rooted in unmet expectations. Examining those expectations and deciding if they are reasonable can be ... Read more
January 9, 2020January 7, 2020
Stretching into the New Year with Restorative Yoga
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
Well, it’s officially 2020! It feels odd to say that. Then again, I’m pretty sure I said the same ... Read more
January 9, 2020January 10, 2020
Filing a Treatment Plan with School When Your Child Has EDS
Health Insights
Managing Ehlers-Danlos syndrome (EDS) can be challenging, especially in a school environment. Many parents find it difficult to ensure ... Read more
January 2, 2020January 2, 2020
Prevalence of EDS and HSD in UK is Significantly Higher Than Previously Thought, Study Says
News
The rare disease status of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) should be re-evaluated, as both conditions seem ... Read more
January 2, 2020December 19, 2019
I Focus on the Holiday Spirit Instead of My EDS
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
I love the holiday season. Time spent with family, brisk winter air, time off from work (a bonus to ... Read more
December 19, 2019December 17, 2019
Deciphering the Types of Bruises My EDS Causes
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
As someone with Ehlers-Danlos syndrome (EDS), bruising is just a part of life. I rarely give my bruises more ... Read more
December 19, 2019December 19, 2019
Atypical Headaches Can Be Initial Symptom of Vascular EDS, Case Report Suggests
News
Atypical headaches on one side of the head, caused by tearing of the walls of the carotid artery — ... Read more
December 12, 2019December 12, 2019
Newly Identified Mutation in TNXB Gene Linked to Classical-like Ehlers-Danlos in Case Report
News
A newly identified mutation in the TNXB gene, which leads to the loss of the Tenascin X protein, is ... Read more
December 12, 2019December 10, 2019
I’m Grateful for the Continuous Benefits of Massage
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns
The past few weeks have gone by like a whirlwind. My horse, Cherry, and I had an awesome time ... Read more
December 10, 2019December 10, 2019
Gene Therapy Takes Center Stage at 2019 NORD Summit
News
With so much recent publicity surrounding gene therapy, it’s no surprise that the topic was a major focus of ... Read more

January 16, 2020January 16, 2020

Smaller Bone Size May Explain Greater Risk of Fractures in EDS Patients, Study Finds

News

Women with hypermobile Ehlers-Danlos syndrome have a smaller cortical bone — the outer part of the bone, essential for its resistance and strength — and for that reason are ... Read more

January 16, 2020January 14, 2020

Getting Back into the Swing of Things

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

One of the great things about working at a school is the time I get off. As someone with Ehlers-Danlos syndrome (EDS), chronic fatigue is my nemesis. I’m always ... Read more

January 13, 2020January 9, 2020

Here’s How I Made the Holiday Season More Enjoyable

Columns, Unbreakable - a Column by Kimberly Stark Horn

Usually, negative feelings are rooted in unmet expectations. Examining those expectations and deciding if they are reasonable can be particularly helpful when life changes. I recently adjusted my expectations ... Read more

January 9, 2020January 7, 2020

Stretching into the New Year with Restorative Yoga

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

Well, it’s officially 2020! It feels odd to say that. Then again, I’m pretty sure I said the same thing back in 2000 and 2010, so I digress. To ... Read more

January 9, 2020January 10, 2020

Filing a Treatment Plan with School When Your Child Has EDS

Health Insights

Managing Ehlers-Danlos syndrome (EDS) can be challenging, especially in a school environment. Many parents find it difficult to ensure that their child receives a good education while balancing safety ... Read more

January 2, 2020January 2, 2020

Prevalence of EDS and HSD in UK is Significantly Higher Than Previously Thought, Study Says

News

The rare disease status of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) should be re-evaluated, as both conditions seem to be more prevalent than previously thought, a U.K. study ... Read more

January 2, 2020December 19, 2019

I Focus on the Holiday Spirit Instead of My EDS

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

I love the holiday season. Time spent with family, brisk winter air, time off from work (a bonus to working for a school), and giving gifts that make people ... Read more

December 19, 2019December 17, 2019

Deciphering the Types of Bruises My EDS Causes

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

As someone with Ehlers-Danlos syndrome (EDS), bruising is just a part of life. I rarely give my bruises more than a passing glance anymore. They’re just of a part ... Read more

December 19, 2019December 19, 2019

Atypical Headaches Can Be Initial Symptom of Vascular EDS, Case Report Suggests

News

Atypical headaches on one side of the head, caused by tearing of the walls of the carotid artery — the artery that supplies oxygenated blood to the brain — ... Read more

December 12, 2019December 12, 2019

Newly Identified Mutation in TNXB Gene Linked to Classical-like Ehlers-Danlos in Case Report

News

A newly identified mutation in the TNXB gene, which leads to the loss of the Tenascin X protein, is associated with the development of classical-like Ehlers-Danlos syndromes (EDS), a ... Read more