Category: Society News
Today, December 3, 2021, is International Day of Persons with Disabilities. For years, this day has represented an awareness, understanding, and advocacy for the worldwide dignity and well-being of people with disabilities. Let’s recognize the global contributions made by people with both visible and invisible disabilities and celebrate the skills, abilities, and resilience demonstrated View page
The Ehlers-Danlos Society is delighted to announce we have received a donation of $260,000 to advance research for those living with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. This transformative gift from an anonymous Donor generously enables us to accelerate research to benefit the community, worldwide. Accelerating Diagnostic Tools Hypermobile EDS (hEDS) remains the only View page
“I was told my symptoms were too “generic.” “I was told that my symptoms didn’t add up.” “I was told both that I was “too young” (age 15 with crippling back pain) and “too old” (with such painful legs I couldn’t bear weight, or ‘growing pains’ as my doctor called them) to View page
The Ehlers-Danlos Society has partnered with ASPEN, the American Society for Parenteral and Enteral Nutrition, for ASPEN Malnutrition Awareness WeekTM on October 4-8, 2021. Proper nutrition is vital in maintaining health, however, nutritional deficiencies often occur in those with EDS and HSD. Eating a well-balanced diet can be a struggle due to GI issues such View page
A statement from The Ehlers-Danlos Society and the EDS and HSD International Consortium Pain Working Group. Pain is common among persons living with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) and is a major contributor to poor quality of life. Origins of pain in persons with EDS and HSD are multi-factorial and multiple View page
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Early diagnosis is crucial to positive patient health, but after diagnosis, there is often little or no follow-up care. When diagnosed, patients are often not given any information about their condition, offered supportive self-management for aspects of their care, adaptions that can be made to improve quality of life, or informed about where to find View page
The Ehlers-Danlos Society is delighted to have joined the Core Steering Committee of the Long COVID Alliance, a network of patient advocates, scientists, disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policymakers and accelerate research to transform our understanding of post-viral illness. Their goal is View page
June is Men’s Health Month. Men can and do endure the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and associated symptoms and conditions. Even though EDS and HSD are underdiagnosed, they can be just as severe and debilitating, no matter your gender identity. All individuals living with EDS or HSD deserve visibility, care, and support. Learning to View page
*Content Warning: discussion of racial violence and trauma* Over a year into a global pandemic, stressors are still ever–present for many. In addition to COVID-19, there is highly publicized racial violence and discrimination. The world awakes this week to news of Chauvin’s conviction after the death of George Floyd. While much of the discussion is centered around the United States, we recognize the grief of racial violence and discrimination worldwide. There View page
