Conditions
Classical Ehlers-Danlos syndrome (cEDS)
Very stretchy, soft skin that bruises and splits easily and heals into wide, thin scars, often with very flexible joints.
About Classical EDS
Classical Ehlers-Danlos syndrome (cEDS) is a rare condition that runs in families. It affects connective tissue, the material that gives strength to skin, joints and blood vessels. A parent with cEDS can pass it to a child.
Skin is often very stretchy and soft. It bruises easily, can split open after small bumps, and may heal into wide, thin scars. Joints often bend further than most people's and can sprain or slip out of place.
A clinical geneticist usually makes the diagnosis. The visit includes an exam of the skin, scars and joints, and questions about your health and your family's health. A genetic test looks for changes in the genes for type V collagen and a few related genes. A small skin sample is sometimes looked at under a strong microscope.
Before a visit, it helps to record cuts that split open and how they healed, bruises, joint injuries and hernias. Photos of scars and skin help too, along with relatives who have similar problems or a diagnosis.
Who usually evaluates it: Usually a clinical geneticist, sometimes working with other clinicians who care for the skin and joints.
What you can record in Selihc Health
- Skin that splits or tears easily, and how cuts and scars healed, with photos
- Bruising, including bruises that show up without a bump or injury
- Joints that sprain, slip or come out of place, joint pain, and flat feet
- Hernias
- Your own check of how far your skin stretches, how far your joints bend, and lumps on or under the skin, labeled as self-reported
- Relatives with similar problems or a diagnosis
- Genetic test and skin biopsy reports, with the genes and findings they name
What only a clinician can do
- Measuring how far the skin stretches, and the joint flexibility exam
- Examining scars, skin lumps, and the skin around the eyes
- Deciding on genetic testing and explaining the result
- Looking for other types of Ehlers-Danlos syndrome and other conditions with similar signs
In an emergency
Get medical care the same day for a cut that gapes open, so it can be closed with care. Call 911 for bleeding that will not stop with firm pressure, or for sudden, severe pain in the belly, side, back or chest.
The published criteria
Your summary organizes your records against these sources, for your clinician to review. What clinicians see
Classical Ehlers-Danlos syndrome: 2017 international classification
Malfait F, Francomano C, Byers P, et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175(1):8-26. doi:10.1002/ajmg.c.31552
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This page is general information written for patients, not medical advice. Content is a draft awaiting clinical review.
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