Living with Familial keratoacanthoma
A rare inherited skin condition with many skin growths, some of which heal on their own.
Understanding Familial keratoacanthoma
People can have many small bumps, larger lesions that heal on their own, and lesions that form nodules or open sores. The growths do not tend to appear on the moist linings of the body. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Small raised bumps (papules)
- Firm lumps under the skin (nodules)
- Open skin sores (ulcers)
- Thickened skin (hyperkeratosis)
- Wart-like growths (papillomas)
- Adenoma sebaceum (small facial 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
Changes in genes cause it. It is autosomal dominant, which means one changed copy of the gene is enough.
Also known as: hereditary keratoacanthoma; multiple familial keratoacanthoma; multiple keratoacanthoma
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 keratoacanthoma.
Explore research for Familial keratoacanthoma
Explore actively recruiting Familial keratoacanthoma studies with HealthSpark.
Find actively recruiting studies for Familial keratoacanthoma with HealthSpark. Share your city to explore research near you.
- 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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