Living with Porokeratosis of Mibelli
A skin condition that begins in childhood or young adulthood with brownish bumps that grow into slowly enlarging, raised patches.
Understanding Porokeratosis of Mibelli
It starts as one or a few small, brownish bumps that grow into raised, bumpy patches. The patches slowly get larger over time. GARD says it may sometimes harm the tissue under the patch, and it may develop into skin cancer.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Small brownish bumps that grow into raised patches
- Thickened, scaly skin
- Itching
- Sensitivity to the sun
- Areas of thin or missing skin
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 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
- 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 says the cause is unknown. Possible risk factors include sunlight or other radiation, genetic factors and a weakened immune system. It can run in families in an autosomal dominant pattern.
Also known as: mibelli's disease; porokeratosis, mibelli
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 Porokeratosis of Mibelli.
Explore research for Porokeratosis of Mibelli
Explore actively recruiting Porokeratosis of Mibelli studies with HealthSpark.
Find actively recruiting studies for Porokeratosis of Mibelli 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 Porokeratosis of Mibelli 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 Porokeratosis of Mibelli
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 Porokeratosis of Mibelli 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.