Tips for Staying Motivated When You Have EDS
Ehlers-Danlos syndrome (EDS) can lead to fatigue and chronic pain for many patients, making it difficult for them to stay motivated to do things. ... Read more
Updates
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NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because ... Read more -
FDA Denies Acer’s Appeal for Edsivo, a Potential Vascular EDS Therapy
The Office of New Drugs (OND) of the U.S. Food and Drug Administration (FDA) has denied an appeal from Acer Therapeutics regarding Edsivo (celiprolol), ... Read more -
Managing Stress and Uncertain Times with EDS
In this time of uncertainty, stress and anxiety (a very common co-diagnosis with Ehlers-Danlos syndrome) management are critical to my self-care. Like virtually everyone ... Read more -
Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19
Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based ... Read more
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Support Networks for EDS
Having a good support network is important for maintaining physical and mental health. Positive ... -
Navigating the Sudden Lifestyle Changes with COVID-19
It’s hard to believe that only a week has passed since I wrote my ... -
Ehlers-Danlos Society Holds Online COVID-19 Support Sessions
The Ehlers-Danlos Society is offering a series of virtual events for community members to ... -
Tips for Managing Anxiety for People with EDS
Many people with Ehlers-Danlos syndrome (EDS) deal with chronic pain and fatigue. This may ... -
Figuring Out the Source of My Unexplained Injuries with EDS
One of the many unusual issues that come with having Ehlers-Danlos syndrome is the ... -
Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
The number of treatments for children with rare diseases has grown over the past decade, ...
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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