Understanding EDS: A Guide for Awareness and Empowerment
What is EDS?
Ehlers–Danlos syndromes are a group of genetic connective tissue disorders affecting collagen production. Symptoms can include hypermobile joints, stretchy skin, and fragile tissues, sometimes leading to serious complications like joint dislocations, chronic pain, or vascular issues—depending on the subtype. There are at least 14 recognized types, including hypermobile, classic, and vascular forms, among others.
Diagnosis & Lived Experience
Diagnosis often involves clinical evaluation, genetic testing (for most types and all types for clinical diagnosis via elimination process), and use of tools like the Beighton scale for hypermobility. However, many people—especially those with the hypermobile type—are initially misdiagnosed with conditions like chronic fatigue syndrome, psychosomatic disorders, or most frustratingly anxiety, delaying proper care.
Misdiagnosis isn’t just a medical barrier; it takes a real emotional toll on the individual.
Why Awareness Matters
Raising awareness offers validation, improves diagnosis accuracy, and promotes better access to supportive care, especially for those whose disabilities are “invisible.” Initiatives such as illuminating buildings or sharing zebras (the symbol of EDS awareness) highlight the importance of understanding this condition. For example, the Nursing College in Sevilla lit up in orange (a colour associated with EDS) on EDS Day to emphasise the need for comprehensive, multidisciplinary care.
Living With EDS: Strategies & Support
Management focuses on symptom relief and improving quality of life. Typical approaches include:
Physiotherapy, tailored exercise, and occupational therapy to strengthen joints and reduce injury risk.
Pain and fatigue management, often through pacing, supportive devices, and medication when appropriate.
Mental health support, as the emotional burden can be as significant as the physical highlighted by research in EDS communities worldwide. This is why building communities for disabilities and chronic illnesses is so important!
Useful Links
Hypermobility Syndromes Association (HMSA)
GESED – Groupe d’Entraide des Syndromes d’Ehlers–Danlos (Belgium)
