Living with Syndactyly type 4
A rare limb condition at birth with all fingers joined by skin, often with extra fingers.
Understanding Syndactyly type 4
It often comes with extra fingers, usually six digits on each hand. The finger bones may fuse into one mass. The feet are occasionally affected. It occurs on its own, without other syndromes. Signs may begin in the newborn or infant years.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Webbing of all fingers on both hands
- Extra fingers (usually six per hand)
- Extra toes
- Joined toes
- Bent fingers that don't straighten
- Short shinbone
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
Changes in the LMBR1 gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: haas type syndactyly; lmbr1 non-syndromic syndactyly; non-syndromic syndactyly caused by mutation in lmbr1; polysyndactyly type haas; polysyndactyly, haas type; syndactyly, type iv
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 Syndactyly type 4.
Explore research for Syndactyly type 4
Explore actively recruiting Syndactyly type 4 studies with HealthSpark.
Find actively recruiting studies for Syndactyly type 4 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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