Living with Ehlers-Danlos syndrome, classic type
An inherited connective tissue condition with stretchy fragile skin, poor wound healing, and loose joints.
Understanding Ehlers-Danlos syndrome, classic type
Common symptoms include skin that stretches more than usual, wounds that heal poorly, and joint hypermobility. More than 90 percent of people with classical EDS have changes in the COL5A1 or COL5A2 gene. Signs begin between birth and childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Stretchy, fragile skin
- Poor wound healing and thin, wide scars
- Very flexible joints
- Low muscle tone
- Tiredness
- Stomach and bowel problems (reflux, constipation)
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, digestive system specialists and genetic 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); Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- 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 the COL5A1 or COL5A2 genes cause most cases, and sometimes the COL1A1 gene. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: ceds; classical eds; classical ehlers-danlos syndrome; eds, classic type; ehlers-danlos syndrome classic type; ehlers-danlos syndrome classical type
Patient organizations
- Ehlers-Danlos SocietyEhlers-Danlos syndrome, classic type · United States
- Bobby Jones Chiari & Syringomyelia FoundationEhlers-Danlos syndrome, classic type · United States
- Coalition for Heritable Disorders of Connective TissueEhlers-Danlos syndrome, classic type · United States
- EDS AwarenessEhlers-Danlos syndrome, classic type · United States
- The Zebra NetworkEhlers-Danlos syndrome, classic type · 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, classic type.
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