Living with Macrodactyly of fingers
A rare condition in which one or more fingers are born larger than usual.
Understanding Macrodactyly of fingers
Tissues in the finger are enlarged, usually within the area served by one nerve, and the nerve itself is longer and thicker. The index finger is most often affected. If more than one finger is involved, they are always next to each other. Growth may be progressive or steady, and it can affect one or both hands. People may have pain and reduced movement.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Enlarged finger (macrodactyly)
- Changes in the shape of the hand
- Bone overgrowth
- Bony growths on the hand bones
- Pain
- Reduced range of motion
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 doesn't describe a cause for this condition yet.
Also known as: macrodactyly of hand
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 fingers.
Explore research for Macrodactyly of fingers
Explore actively recruiting Macrodactyly of fingers studies with HealthSpark.
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- 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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