Living with Macrodactyly of toe
A condition present from birth in which one or more toes are larger than usual.
Understanding Macrodactyly of toe
It is a type of limb overgrowth that is not part of a larger syndrome. The enlargement can involve some or all tissues of the toe. It may keep growing out of proportion, or stay in proportion. It can affect one foot or both. GARD says it usually starts in a newborn or infant.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Enlarged toe or toes
- Wide, long bones in the foot (broad metatarsal)
- Foot turned inward toward the middle of the body
- Enlarged ends of the toe bones
- Bones of the foot and ankle that harden early
- Abnormal hardening of the foot bones (metatarsal ossification)
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 (also called variants) cause this condition. GARD does not name a specific gene.
Also known as: foot macrodactyly; macrodactyly of foot; macrodactyly of toes
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 Macrodactyly of toe.
Explore research for Macrodactyly of toe
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- Recruiting studies from ClinicalTrials.gov
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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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