Ehlers Danlos Syndrome News and Research

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Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels and other organs. EDS usually affects your skin, joints and blood vessel walls. Symptoms include loose joints, fragile small blood vessels, abnormal scar formation and wound healing, soft, velvety, stretchy skin that bruises easily. There are several types of EDS. They can range from mild to life-threatening. About 1 in 5,000 people has EDS. There is no cure. Treatment involves managing symptoms. It also includes learning how to protect your joints and prevent injuries.

Mount Sinai secures $6.2 million grant to expand the Cohen Center for Recovery From Complex Chronic Illnesses

Mount Sinai's Department of Rehabilitation and Human Performance has announced a $6.2 million grant from the Steven & Alexandra Cohen Foundation.

20 Sep 2023

Decisions by CVS and Optum panicked thousands of their sickest patients

The fear started when a few patients saw their nurses and dietitians posting job searches on LinkedIn.

7 Feb 2023

Spontaneous coronary artery dissection: The leading cause of pregnancy-associated heart attacks

Despite increased awareness over the past decades, only about half (56%) of women recognize that heart disease is their No. 1 killer. Heart disease is the leading cause of death for women in the United States, accounting for 1 in every 5 female deaths.

3 Feb 2023

For medically vulnerable families, inflation’s squeeze is inescapable

Deborah Lewis rose from bed before dawn and signed in to her phone so she could begin delivering fast food, coffee, and groceries to residents in this western patch of the Mojave Desert where test pilot Chuck Yeager broke the sound barrier generations ago.

15 Aug 2022

Study suggests history of childhood traumas may increase the risk of long COVID

In a new study, researchers found childhood trauma to be a risk factor for post-coronavirus disease.

25 Feb 2022

$Researchers report a new genetic cause for infantile fractures$

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 disorders of the skeleton, as well as other predisposing maternal metabolic and vascular disorders.

18 Jun 2021

Study identifies genetic mutation associated with rare blood vessel disease

Understanding of fibromuscular dysplasia (FMD), a rare blood vessel disease, is making the jump from the laboratory to the clinic with new findings about a genetic variant.

24 Sep 2020

Researchers solve the mystery of genetic defect in horses

Warmblood fragile foal syndrome is a severe, usually fatal, genetic disease that manifests itself after birth in affected horses.

16 Jul 2020

Researchers identify new factor that regulates the size of scar following heart injury

When a person has a heart attack, the person's coronary artery is blocked, cutting off the flow of blood and oxygen to that portion of the person's heart.

14 Jul 2020

Study reveals key role of a protein in regulating scar tissue growth after heart attacks

New UCLA research conducted in mice could explain why some people suffer more extensive scarring than others after a heart attack.

6 Jul 2020

Study offers potential targets for treating people with Ehlers-Danlos syndrome

Researchers have discovered that a defective form of the protein aortic carboxypeptidase-like protein (ACLP) from patients with Ehlers-Danlos syndrome (EDS) is retained in cells and induces cellular stress.

4 Jun 2020

Researchers design developmental map of sound-sensing structure in mice’s inner ear

A team of researchers has generated a developmental map of a key sound-sensing structure in the mouse inner ear.

30 May 2020

The Ehlers-Danlos Society Center opens at IU Health to advance research and patient care

The Ehlers-Danlos Society is pleased to announce the opening of The Ehlers-Danlos Society Center at IU Health, committed to advancing research, education and patient care for those living with the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions.

8 Oct 2019

In tiny doses, an addiction medication moonlights as treatment for chronic pain

Lori Pinkley, a 50-year-old from Kansas City, Mo., has struggled with puzzling chronic pain since she was 15.

26 Sep 2019

Cardiovascular surgeons heal a patient’s aortic dissection

When James Inman, 59, first experienced chest pain one night, he tried to brush it off and go back to sleep. But the pain became unbearable and Inman felt like something was wrong, so he called 911.

19 Sep 2019

Study: People with rare diseases at high risk for experiencing poor quality of life

People with rare diseases are at high risk for experiencing poor quality of life, including increased levels of anxiety, depression, pain, fatigue and limited ability to participate in society, a new study from an Oregon State University shows.

19 Dec 2017

Body cooling for wheelchair comfort

People with a Spinal Cord Injury (SCI) are unable to sweat because their body can no longer communicate with their brain. They risk overheating with every revalidation exercise. While this was the main driver for Staels Design, we have since noted that almost every single wheelchair user has issues with heat and moisture.

16 Jun 2017

Viewpoints: Battle for Medicaid; GOP's report on enrollment off base; need for kidney donations

The final battle of the war over the Affordable Care Act is being waged today over expanding Medicaid. ... The refusal of more than half the states to cover so many of their neediest citizens -; the number who have fallen into the "coverage gap" is estimated at 5 million -; amazes and frustrates health experts.

6 May 2014

A Map of 'Shortcuts' simplifies the hunt for disease-causing genes

Some diseases are caused by single gene mutations. Current techniques for identifying the disease-causing gene in a patient produce hundreds of potential gene candidates, making it difficult for scientists to pinpoint the single causative gene.

19 Mar 2013

Researchers to develop new diagnostic tools and treatments for people with rare diseases

A multi-million Euro initiative is bringing together researchers from across the world to develop new diagnostic tools and new treatments for people with rare diseases and to connect research data in this area on a global scale.

25 Jan 2013