Living with Ehlers-Danlos syndrome
A group of inherited conditions that affect connective tissue, causing very flexible joints, stretchy fragile skin, and easy bruising.
Understanding Ehlers-Danlos syndrome
Symptoms range from mildly loose joints to more serious complications. Researchers describe 13 types in the 2017 classification. Loose joints are common, can dislocate, and may cause chronic pain. Many people have soft, stretchy, fragile skin that bruises easily, and some types cause unusual scarring. Children with loose joints often have low muscle tone, which can delay sitting, standing, and walking. Signs show up in the newborn and infant years.
Signs & symptoms
GARD doesn't list a separate symptom list for this condition, but the summary describes these features:
- Very flexible joints (hypermobility)
- Joints that dislocate easily
- Chronic joint pain
- Soft, stretchy, fragile skin
- Easy bruising
- Low muscle tone in children
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists, bone and joint specialists, genetic specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Ehlers-Danlos Society and Bobby Jones Chiari & Syringomyelia Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Ehlers-Danlos Society, Bobby Jones Chiari & Syringomyelia Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Ehlers-Danlos Society and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in a person's genes cause this condition, and different types involve different genes. It can be autosomal dominant, autosomal recessive, or X-linked.
Also known as: cutis elastica; cutis hyperelastica; cutis hyperelastica dermatorrhexis; danlos disease; danlos disease, ehlers; danlos ehlers syndrome
Patient organizations
- Ehlers-Danlos SocietyEhlers-Danlos syndrome · United States
- Bobby Jones Chiari & Syringomyelia FoundationEhlers-Danlos syndrome · United States
- Ben's FriendsEhlers-Danlos syndrome · United States
- EDS AwarenessEhlers-Danlos syndrome · United States
- The Zebra NetworkEhlers-Danlos syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ehlers-Danlos syndrome.
Explore research for Ehlers-Danlos syndrome
Explore actively recruiting Ehlers-Danlos syndrome studies with HealthSpark.
Find actively recruiting studies for Ehlers-Danlos syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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