Living with Disseminated superficial actinic porokeratosis
A skin condition with many small, scaly brown patches, mostly on sun-exposed skin.
Understanding Disseminated superficial actinic porokeratosis
It causes many small, brownish patches with a distinct border, most often on sun-exposed skin like the lower arms and legs. It usually starts in the 30s or 40s and rarely affects children. Patches are more noticeable in summer. It is usually not cancerous, though skin cancer may occasionally develop in patches.
Signs & symptoms
Symptoms vary from person to person. GARD lists these as the most common:
- Small, scaly brownish patches
- Sensitivity to sunlight
- Itching (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
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
Some cases are caused by changes in the MVK or SART3 genes. It may be passed down in an autosomal dominant way or occur in people with no family history.
Also known as: dsap - disseminated superficial actinic porokeratosis
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 Disseminated superficial actinic porokeratosis.
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