Living with Ehlers-Danlos syndrome, familial joint laxity type
A rare inherited condition with very loose joints that dislocate often, with no skin changes.
Understanding Ehlers-Danlos syndrome, familial joint laxity type
The joints most often affected are the hip, shoulder, elbow, and kneecap. Hip dislocation is often present from birth. People often have muscle and joint pain and may develop joint wear at a relatively young age. GARD says skin abnormalities are absent. It can begin at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Very flexible joints
- Repeated joint dislocations
- Hip dislocation present at birth
- Kneecap dislocation
- Muscle and joint pain
- Early joint wear
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 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
- 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. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: articular hypermobility syndrome; eds xi; eds11; ehlers-danlos syndrome type 11, formerly; ehlers-danlos syndrome type xi; ehlers-danlos syndrome, type 11
Patient organizations
- Ehlers-Danlos SocietyEhlers-Danlos syndrome, familial joint laxity type · United States
- Coalition for Heritable Disorders of Connective TissueEhlers-Danlos syndrome, familial joint laxity type · United States
- EDS AwarenessEhlers-Danlos syndrome, familial joint laxity 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, familial joint laxity type.
Explore research for Ehlers-Danlos syndrome, familial joint laxity type
Explore actively recruiting Ehlers-Danlos syndrome, familial joint laxity type studies with HealthSpark.
Find actively recruiting studies for Ehlers-Danlos syndrome, familial joint laxity type 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Ehlers-Danlos syndrome, familial joint laxity type studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Ehlers-Danlos syndrome, familial joint laxity type
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Ehlers-Danlos syndrome, familial joint laxity type experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.