Living with Multiple self-healing squamous epithelioma
A rare inherited skin condition with several skin growths on the face and limbs that heal on their own and leave scars.
Understanding Multiple self-healing squamous epithelioma
People with this condition develop several skin tumors that look like keratoacanthomas, mostly on the face and limbs. They can grow into nearby tissue. The tumors usually heal on their own after several months and leave pitted scars. It can start at a variety of ages.
Signs & symptoms
GARD lists this as the most common symptom:
- Skin growths that heal on their own (self-healing squamous epithelioma)
- Pitted scars after healing
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.
- 3Consider genetic testing
Changes in TGFBR1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
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
GARD lists changes in the TGFBR1 gene. The condition is autosomal dominant, which means one changed copy of the gene can be enough to cause it.
Also known as: familial primary self-healing squamous epithelioma of the skin, ferguson-smith type; ferguson-smith disease; ferguson-smith syndrome; ferguson-smith tumor; ferguson-smith tumour; msse
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 Multiple self-healing squamous epithelioma.
Explore research for Multiple self-healing squamous epithelioma
Explore actively recruiting Multiple self-healing squamous epithelioma studies with HealthSpark.
Find actively recruiting studies for Multiple self-healing squamous epithelioma 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Multiple self-healing squamous epithelioma studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Multiple self-healing squamous epithelioma
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Multiple self-healing squamous epithelioma experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.