Living with Porokeratosis 3, disseminated superficial actinic type
A rare skin condition with ring-shaped, scaly patches that spread outward, often on sun-exposed skin.
Understanding Porokeratosis 3, disseminated superficial actinic type
The plaques spread outward from a center point. There are several types of porokeratosis. The most common, disseminated superficial actinic porokeratosis (DSAP), causes many small, thick, scaly, ring-shaped spots, mostly on sun-exposed skin like the face, neck, arms and legs. The spots usually start in adolescence, and most people have them by their 30s and 40s.
Signs & symptoms
GARD doesn't list a symptom list for this condition. It describes these signs:
- Ring-shaped plaques with a raised, scaly border
- Many small, thick, scaly spots
- Spots on sun-exposed skin
- Nail changes (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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 rare disease patient organizations for support
- 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 the MVK gene have been found to cause several types of porokeratosis. It is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: porok3; porokeratosis 3, mibelli type; porokeratosis 3, multiple types; porokeratosis, disseminated superficial actinic, 1
Patient organizations
Rare-disease groups that can help
- 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 3, disseminated superficial actinic type.
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