Living with Larsen-like osseous dysplasia-short stature syndrome
A rare bone condition with multiple joint dislocations from birth, short stature, and facial and spine differences.
Understanding Larsen-like osseous dysplasia-short stature syndrome
People have several large joint dislocations from birth, facial differences (large head, flat nose, prominent forehead, cleft palate), spine differences, cylindrical fingers, and clubfeet. Growth is slow, leading to short stature, and bone age is delayed. Severe developmental delay, low muscle tone, heart defects, and kidney differences are also reported. It is noticed in newborns.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Joint dislocations from birth
- Short stature
- Hip dysplasia
- Curved spine (scoliosis)
- Short fingers and toes
- Low bone density
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 bone and joint specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 genes (also called variants) cause this condition. It does not name specific genes or describe inheritance.
Also known as: larsen-like multiple joint dislocation syndrome; larsen-like syndrome, isolated cases
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Larsen-like osseous dysplasia-short stature syndrome.
Explore research for Larsen-like osseous dysplasia-short stature syndrome
Explore actively recruiting Larsen-like osseous dysplasia-short stature syndrome studies with HealthSpark.
Find actively recruiting studies for Larsen-like osseous dysplasia-short stature 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Larsen-like osseous dysplasia-short stature syndrome 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 Larsen-like osseous dysplasia-short stature syndrome
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 Larsen-like osseous dysplasia-short stature syndrome 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.