Updates

January 16, 2020January 16, 2020
Smaller Bone Size May Explain Greater Risk of Fractures in EDS Patients, Study Finds

Women with hypermobile Ehlers-Danlos syndrome have a smaller cortical bone — the outer part of the bone, essential for its resistance and strength — ... Read more
January 16, 2020January 14, 2020
Getting Back into the Swing of Things

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 ... Read more
January 13, 2020January 9, 2020
Here’s How I Made the Holiday Season More Enjoyable

Usually, negative feelings are rooted in unmet expectations. Examining those expectations and deciding if they are reasonable can be particularly helpful when life changes. ... Read more
January 9, 2020January 7, 2020
Stretching into the New Year with Restorative Yoga

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 ... Read more
January 9, 2020January 10, 2020
Filing a Treatment Plan with School When Your Child Has EDS

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 ... Read more

News

Prevalence of EDS and HSD in UK is Significantly Higher Than Previously Thought, Study Says
January 2, 2020January 2, 2020
The rare disease status of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) should be ...
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

I Focus on the Holiday Spirit Instead of My EDS
January 2, 2020December 19, 2019
I love the holiday season. Time spent with family, brisk winter air, time off ...
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

Deciphering the Types of Bruises My EDS Causes
December 19, 2019December 17, 2019
As someone with Ehlers-Danlos syndrome (EDS), bruising is just a part of life. I ...
News

Atypical Headaches Can Be Initial Symptom of Vascular EDS, Case Report Suggests
December 19, 2019December 19, 2019
Atypical headaches on one side of the head, caused by tearing of the walls ...
News

Newly Identified Mutation in TNXB Gene Linked to Classical-like Ehlers-Danlos in Case Report
December 12, 2019December 12, 2019
A newly identified mutation in the TNXB gene, which leads to the loss of ...
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

I’m Grateful for the Continuous Benefits of Massage
December 12, 2019December 10, 2019
The past few weeks have gone by like a whirlwind. My horse, Cherry, and ...

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Gene Therapy Takes Center Stage at 2019 NORD Summit
December 10, 2019December 10, 2019
With so much recent publicity surrounding gene therapy, it’s no surprise that the topic ...
HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
December 6, 2019December 6, 2019
Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or ...
Ehlers-Danlos Society Receives Anonymous $1M Gift for Research
December 5, 2019December 5, 2019
My Time in College Introduced Me to Horseback Riding
December 5, 2019December 2, 2019
Low Sodium Diet for EDS
December 3, 2019December 6, 2019
Taking Time to Recharge
November 21, 2019November 19, 2019

Study Finds Shoulder Abnormalities in People with Hypermobile EDS
November 21, 2019November 21, 2019
People with hypermobile Ehlers-Danlos syndrome (hEDS) have larger spaces in the shoulder joint than ...
Avoiding Contact Sports/High-impact Activities When You Have EDS
November 15, 2019November 18, 2019
Will Safety Vest Draw Attention to My EDS?
November 14, 2019November 12, 2019
Nerve Root Blocks May Pose Risk of CSF ‘Leaks’ in EDS Patients, Case Study Warns
November 14, 2019November 14, 2019

Rare Disease Film Festival Highlights Patient and Researcher Unity
November 13, 2019
Rare disease-themed videos glowed on a large screen before an audience of people in ...
Individualized Education Plans for Children with EDS
November 8, 2019
Penn State Award Targets Doctors of Ehlers-Danlos Patients Without Specialty in This Rare Disease
November 7, 2019November 7, 2019

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

Celebrities Share Their EDS Battles and Help to Spread Awareness
November 7, 2019November 5, 2019
Recently, Ehlers-Danlos syndrome (EDS) made news headlines. That doesn’t happen often. Actress Lena Dunham ...
Columns, Unbreakable - a Column by Kimberly Stark Horn

Acting Up, Ehlers-Danlos Style
November 4, 2019October 31, 2019
A few months ago, our community’s theater company held auditions for two productions. At ...
News

Routine Heart Tests Not Needed for Hypermobile EDS Patients Unless Cardiac Problems in Family, Study Suggests
October 31, 2019October 31, 2019
Routine heart tests and echocardiography — a non-invasive test that uses sound waves to create moving ...
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

I’ve Found Some Success with a New Side Road
October 31, 2019October 29, 2019
I’ve previously discussed how having Ehlers-Danlos syndrome (EDS) means that I often have to ...
Health Insights

Playing Musical Instruments When you Have EDS
October 28, 2019November 14, 2019
Ehlers-Danlos syndrome (EDS) is the name given to a group of rare disorders that ...
News

No Increased Risk of Complications from Corrective Spinal Surgery in EDS Children, Study Suggests
October 24, 2019October 24, 2019
Surgery to correct spinal abnormalities does not appear to pose additional risks for bleeding ...
Black and Blue Ribbons - a Column by Karen Del Vecchio, Columns

I’m Determined Not to Let EDS Keep Me Down
October 24, 2019October 21, 2019
Generally speaking, showing my horse is great. The shows are exhausting, but they are ...
Columns, Unbreakable - a Column by Kimberly Stark Horn

My Disabled Parking Placard Has Expanded My World
October 21, 2019October 17, 2019
In the not-too-distant past, I hated shopping. Walking across parking lots and winding my ...
Health Insights

Tips for Lowering Your Blood Pressure When You Have EDS
October 18, 2019
Blood pressure is determined by the amount of blood your heart pumps and the ...

September 12, 2018September 12, 2018

Hypermobile EDS Linked to Severe GI Symptoms, Lower Quality of Life, Study Reports

News

Patients with hypermobile Ehlers-Danlos syndrome (hEDS) have an increased prevalence and severity of gastrointestinal (GI) symptoms, and use more potentially damaging medications than healthy people without the disorder, according to a new study. The data also showed that hEDS ... Read more

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