Living with Laurin-Sandrow syndrome
A very rare condition that changes how the hands, feet, nose, and limb bones form.
Understanding Laurin-Sandrow syndrome
Features include fused and extra fingers, mirror-image feet, and a small nose with a short nasal tip. Forearm or lower leg bones may be duplicated, and sometimes the shinbone (tibia) is missing. It has been described in fewer than 20 cases and may be noticed during pregnancy or at birth.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Extra thumb (preaxial polydactyly)
- Fused fingers or toes (syndactyly)
- Mirror-image extra fingers or toes
- Duplicated calf bone (fibula)
- Missing shinbone (absent tibia)
- Flat or prominent nose
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.
- 3Consider genetic testing
Changes in LMBR1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
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 the cause is unknown, and different ways of inheritance have been suggested. The LMBR1 gene is listed, and the condition is listed as autosomal dominant.
Also known as: fibula and ulna, duplication of, with absence of tibia and radius; laurin sandrow syndrome; lss; mirror hands and feet co-occurrent with nasal defect; mirror hands and feet with nasal defects; mirror hands and feets-nasal defects syndrome
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 Laurin-Sandrow syndrome.
Explore research for Laurin-Sandrow syndrome
Explore actively recruiting Laurin-Sandrow syndrome studies with HealthSpark.
Find actively recruiting studies for Laurin-Sandrow syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- 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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