Living with Gollop-Wolfgang complex
A rare condition present at birth with a split thighbone, short or missing leg and forearm bones, and fewer fingers or a split hand.
Understanding Gollop-Wolfgang complex
Features include a notched thighbone, a missing or underdeveloped shin bone and inner forearm bone with limb shortening, and fewer fingers or a cleft hand. It is noticed during pregnancy or in the newborn period.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Notched or split thighbone (bifid femur)
- Missing or small shin bone (tibia)
- Missing or small inner forearm bone (ulna)
- Cleft hand (ectrodactyly)
- Single finger on the hand (monodactyly)
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
Changes in genes cause this condition. GARD lists both autosomal dominant and autosomal recessive inheritance. It does not name the gene.
Also known as: bifid femur co-occurrent with monodactylous ectrodactyly; bifid femur with monodactylous ectrodactyly; bifid femur-monodactylous ectrodactyly syndrome; gollop wolfgang complex; gwc
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 Gollop-Wolfgang complex.
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