Educational information, not a treatment plan. This overview is meant to help you understand the condition and prepare informed questions. Diagnosis and treatment decisions should always be made with a qualified healthcare professional. Find a specialist or read our medical disclaimer.
A group of inherited connective tissue disorders causing joint hypermobility, skin changes, and tissue fragility — frequently overlapping with chronic pain and dysautonomia.
Overview
Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders affecting the body's collagen, which provides strength and elasticity to skin, joints, blood vessels, and other tissues. The most common form, hypermobile EDS (hEDS), causes joint hypermobility, chronic pain, and tissue fragility. EDS frequently overlaps with other conditions — including POTS, fibromyalgia, AMPS, and digestive motility disorders — and many patients carry multiple diagnoses. EDS is a genetic, physical condition. While there is no cure, symptom management and preventive care can significantly improve quality of life. Some rarer forms of EDS (such as vascular EDS) carry serious risks and require specialized monitoring.
Common Symptoms
Symptoms vary by subtype but commonly include: joint hypermobility and frequent dislocations or subluxations; chronic joint and muscle pain; soft, stretchy or fragile skin; easy bruising; slow wound healing; chronic fatigue; digestive issues; and, in many patients, associated dysautonomia (POTS) and centralized pain. Symptoms often worsen with activity and may fluctuate. Joint instability can lead to injury and repetitive strain.
Diagnosis
Diagnosis is based on clinical criteria, family history, and, for some subtypes, genetic testing. The hypermobile form (hEDS) is diagnosed clinically using the 2017 hEDS criteria, as no genetic test exists for it yet. Rarer subtypes (classical, vascular, others) are confirmed through genetic testing. Diagnosis is typically made by a geneticist, rheumatologist, or clinician experienced with connective tissue disorders. Because of its overlap with many conditions, a comprehensive evaluation is important.
Current Treatments
There is no cure for EDS, so treatment focuses on symptom management and preventing complications. Key approaches include: specialized physical therapy to stabilize joints and build muscle support (avoiding overstretching); joint protection and pacing; pain management; management of associated conditions like POTS and digestive issues; and, for vascular EDS, careful cardiovascular monitoring and precautions. Bracing and assistive devices may help. A multidisciplinary approach is often most effective. Patients benefit from working with providers who understand connective tissue disorders.
Research Summary
EDS research focuses on collagen and extracellular matrix biology, the genetic basis of each subtype, the mechanisms linking hEDS to dysautonomia and centralized pain, and optimal rehabilitation strategies. The 2017 international classification standardized subtypes and diagnostic criteria. Research into mast cell activation, gastrointestinal dysfunction, and the biomechanical consequences of joint hypermobility is ongoing. For hEDS, the search for a genetic marker remains a major research priority.
Community Resources
The Ehlers-Danlos Society (ehlers-danlos.com): the leading global organization for EDS education, research, and support. EDS Society support groups and provider directories. Dysautonomia International (relevant for the POTS overlap). Peer communities can be an important source of practical strategies for living with a connective tissue disorder.
References
1. The Ehlers-Danlos Society (ehlers-danlos.com). 2. Malfait F et al. The 2017 international classification of the Ehlers-Danlos syndromes. American Journal of Medical Genetics, 2017. 3. National Organization for Rare Disorders (rarediseases.org). 4. Dysautonomia International (dysautonomiainternational.org). 5. NIH Genetic and Rare Diseases Information Center (rarediseases.info.nih.gov). Note: this information is educational and not a substitute for professional medical advice.