Living with Familial multiple discoid fibromas
An inherited skin condition with many small, firm, skin-colored bumps on the ears and center of the face.
Understanding Familial multiple discoid fibromas
The bumps are skin-colored, flat or dome-shaped, and usually appear in childhood or adolescence. They are noncancerous (benign) growths linked to the hair disc, a small pad of tissue around a hair. Many have a hair at or just outside the edge. FMDF is similar to Birt-Hogg-Dube syndrome but is different in its tissue findings and genetics.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. Its summary describes:
- Many small, firm skin-colored bumps (papules)
- Bumps on the ears and center of the face
- Bumps that are flat or dome-shaped
- A hair at or near the edge of many bumps
- Tiny visible blood vessels on the bumps
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, genetic 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); Genetic specialists (geneticists); 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
FMDF is passed down in an autosomal dominant way, which means one changed copy of a gene is enough. GARD doesn't name the gene.
Also known as: familial multiple discoid fibroma; familial multiple trichodiscoma; familial multiple trichodiscomas; fmdf; hereditary multiple trichodiscomas; small benign fibrovascular tumor of the dermal part of the hair disk
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 Familial multiple discoid fibromas.
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