Disseminated superficial actinic porokeratosis

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ORPHA:79152OMIM:175900Q82.8
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2Specialists8Treatment centers

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Overview

Disseminated superficial actinic porokeratosis (DSAP) is a rare inherited skin condition that causes small, ring-shaped patches to form on the skin. These patches have a slightly raised, rough border and a flat or slightly sunken center. The name 'actinic' refers to the fact that sun exposure plays a big role in triggering and worsening the condition. DSAP is the most common form of a group of skin disorders called porokeratoses. The patches usually appear on the arms and legs, especially on areas that get a lot of sun, like the forearms and lower legs. They tend to be more noticeable in summer and may fade a little in winter. The patches are usually not painful, but some people find them itchy or cosmetically bothersome. Over time, a small number of these patches can develop into skin cancer, so regular skin checks are important. There is no cure for DSAP, but several treatments can help manage the appearance of the patches and reduce discomfort. These include prescription creams, light-based therapies, and procedures to remove individual lesions. Sun protection is one of the most important steps a person with DSAP can take to slow the progression of the condition and lower the risk of skin cancer.

Key symptoms:

Small ring-shaped or oval patches on the skin with a raised, rough borderFlat or slightly sunken center within each patchPatches mainly on sun-exposed areas like forearms, lower legs, and shouldersPatches that become more noticeable or numerous after sun exposureMild itching in some patchesDry or scaly texture on affected skinPatches that may be slightly darker or lighter than surrounding skinGradual increase in the number of patches over timeRarely, a patch that changes in appearance, bleeds, or grows quickly (possible sign of skin cancer)

Clinical phenotype terms (4)— hover any for plain English
PorokeratosisHP:0200044Squamous cell carcinomaHP:0002860
Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Disseminated superficial actinic porokeratosis.

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No actively recruiting trials found for Disseminated superficial actinic porokeratosis at this time.

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Specialists

2 foundView all specialists →
DM
Dirk Elston, MD
CHARLESTON, SC
Specialist
PI on 2 active trials
EM
Eidi Christensen, MD
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Disseminated superficial actinic porokeratosis.

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Community

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Latest news about Disseminated superficial actinic porokeratosis

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Questions for your doctor

Bring these to your next appointment

  • Q1.Which of my skin patches are most at risk of becoming skin cancer, and how often should I have them checked?,What sun protection measures are most important for me specifically?,Which treatment option do you recommend for my patches, and what results should I expect?,Should my family members be tested or examined for this condition?,Are there any clinical trials or new treatments I should know about?,What warning signs should prompt me to come in urgently between scheduled appointments?,Should I have genetic testing, and what would the results mean for me and my children?

Common questions about Disseminated superficial actinic porokeratosis

What is Disseminated superficial actinic porokeratosis?

Disseminated superficial actinic porokeratosis (DSAP) is a rare inherited skin condition that causes small, ring-shaped patches to form on the skin. These patches have a slightly raised, rough border and a flat or slightly sunken center. The name 'actinic' refers to the fact that sun exposure plays a big role in triggering and worsening the condition. DSAP is the most common form of a group of skin disorders called porokeratoses. The patches usually appear on the arms and legs, especially on areas that get a lot of sun, like the forearms and lower legs. They tend to be more noticeable in summ

How is Disseminated superficial actinic porokeratosis inherited?

Disseminated superficial actinic porokeratosis follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Disseminated superficial actinic porokeratosis typically begin?

Typical onset of Disseminated superficial actinic porokeratosis is adult. Age of onset can vary across affected individuals.

Which specialists treat Disseminated superficial actinic porokeratosis?

2 specialists and care centers treating Disseminated superficial actinic porokeratosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.