What Is Ehlers-Danlos Syndrome? A Plain Language Guide
If you have ever heard the words Ehlers-Danlos Syndrome and wondered what they mean — you are not alone. EDS is one of the most misunderstood and underdiagnosed conditions affecting people across the United States and around the world.
The Andrea Foundation For EDS (TAFFEDS) was created to change that. This article explains EDS in plain language anyone can understand.
What Is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome — often called EDS — is a group of heritable connective tissue disorders. Connective tissue is the material that holds the body together — it makes up skin, joints, blood vessel walls, organ linings, and much more.
When connective tissue does not form correctly because of a genetic difference, the results can affect nearly every system in the body. That is what happens in EDS.
EDS is not one single condition. It includes 13 recognized types, each with its own features and medical considerations.
How Common Is EDS?
EDS affects an estimated one in five thousand people in the United States. That means hundreds of thousands of Americans are living with some form of EDS right now.
Despite this, EDS remains significantly underdiagnosed. The average person with EDS waits about fifteen years to receive a correct diagnosis. During those fifteen years, many people are told their symptoms are not real, are misdiagnosed with other conditions, or do not have access to healthcare professionals who recognize what EDS looks like.
Why Is EDS Called an Invisible Disease?
Many people with EDS look healthy on the outside. Their condition is not visible to others. They may be able to smile and function in public while managing significant daily pain, exhaustion, and other challenges behind closed doors.
This invisibility is one of the hardest parts of living with EDS. It can lead to medical dismissal, social misunderstanding, and deep personal isolation. The Andrea Foundation for EDS exists to make EDS more visible—through education, awareness, storytelling, and community.
What Causes EDS?
EDS is a genetic condition — meaning it is caused by differences in genes that affect how connective tissue proteins like collagen are made. Because of this, EDS often runs in families, though it can also occur without a family history.
What Are the Symptoms of EDS?
EDS symptoms vary by type and individual. Common symptoms across multiple EDS types include joint hypermobility — joints that move beyond the normal range — chronic widespread pain, fatigue, skin that may be stretchy or fragile, digestive issues, heart rate abnormalities, anxiety and depression, and many other symptoms that affect daily life.
How Is EDS Diagnosed?
EDS diagnosis is primarily clinical — meaning it is based on a healthcare professional’s examination and the patient’s medical history rather than a single test. Because EDS has so many overlapping symptoms and presentations, finding a healthcare professional who recognizes and understands EDS is often the most difficult part of the diagnostic journey.
The Andrea Foundation For EDS Is Here for You
If you are searching for answers about EDS—for yourself or someone you love—please know you are not alone. The Andrea Foundation For EDS (TAFFEDS) was created from sixteen years of searching for exactly those answers.
Our foundation provides free educational resources, awareness content, and community support to EDS patients and families across the United States. Follow us on social media, read our EDS Awareness Guide, and watch The Invisible Disease — our free story series — to learn more.
Medical Disclaimer: This article is for educational and awareness purposes only. It is not medical advice and is not intended to replace consultation with a qualified healthcare professional. Always seek appropriate professional medical advice regarding symptoms, diagnosis, or treatment.