Living with Porokeratosis 4, disseminated superficial actinic type
A rare skin condition with ring-shaped, scaly patches that spread outward, often on sun-exposed areas.
Understanding Porokeratosis 4, disseminated superficial actinic type
The patches have a scaly border and spread outward. The most common type, disseminated superficial actinic porokeratosis (DSAP), causes small, raised, scaly patches on sun-exposed areas such as the face, neck and limbs. It usually starts in adolescence and can continue into adulthood. It is not contagious.
Signs & symptoms
GARD doesn't list a symptom list for this condition. It describes these signs:
- Raised, ring-shaped patches
- Scaly border that spreads outward
- Patches on the face, neck and limbs
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
GARD says genetic factors can cause porokeratosis, but more research is needed to understand this.
Also known as: porok4; porokeratosis 4, disseminated superficial actinic; porokeratosis, disseminated superficial actinic 2
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 4, disseminated superficial actinic type.
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