Living with Infantile digital fibromatosis
A rare, benign condition with small firm skin growths on the fingers and toes in babies and children.
Understanding Infantile digital fibromatosis
The growths are pinkish or flesh-colored, usually less than 2 cm, and may be single or multiple. They tend to come back. It can appear from birth to childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Firm skin nodules on the fingers and toes
- Thickened outer layer of skin (hyperkeratosis)
- Pain (less common)
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 cancer specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists); Skin, hair, and nail specialists (dermatologists)
- 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 Children's Skin Disease Foundation
- 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: digital fibrous tumor of reye; digital fibrous tumour of reye; inclusion body fibromatosis; inclusion body fibromatosis (disease); infantile digital fibroma; infantile digital fibroma/fibromatosis
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- 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 Infantile digital fibromatosis.
Explore research for Infantile digital fibromatosis
Explore actively recruiting Infantile digital fibromatosis studies with HealthSpark.
Find actively recruiting studies for Infantile digital fibromatosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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