Porokeratosis of Mibelli

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ORPHA:735OMIM:175800Q82.8
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2Specialists8Treatment centers

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Overview

Porokeratosis of Mibelli is a rare skin condition that causes unusual patches to form on the skin. These patches have a distinctive raised, ridge-like border that forms a ring around a dry or slightly sunken center. The condition is named after the Italian doctor Vittorio Mibelli, who first described it in 1893. It is sometimes simply called 'Mibelli porokeratosis' or 'classic porokeratosis.' The patches most often appear on the hands, feet, arms, and legs, but can show up anywhere on the body, including the face and genitals. They tend to grow slowly over many years and can range from a few millimeters to several centimeters in size. The exact cause involves changes (mutations) in genes that help control how skin cells grow and divide. When these genes do not work properly, skin cells pile up abnormally, creating the characteristic raised border called a 'cornoid lamella.' Sun exposure, a weakened immune system, and certain medications can trigger or worsen the condition. While porokeratosis of Mibelli is not life-threatening, it does carry a small but real risk of turning into skin cancer over time, particularly squamous cell carcinoma. Because of this, regular skin check-ups are very important. Treatment focuses on managing symptoms, improving appearance, and watching closely for any signs of cancer. Options include topical creams, laser therapy, cryotherapy (freezing), and in some cases surgical removal of patches.

Key symptoms:

Raised, ridge-like ring-shaped borders on the skin (called cornoid lamella)Dry, flat, or slightly sunken skin inside the ringPatches that grow slowly over timeSkin patches that may be brown, pink, or skin-coloredMild itching or irritation in affected areasPatches appearing on hands, feet, arms, or legsPatches that may appear on the face or genitalsSkin that looks rough or scaly within the patchOccasional soreness or tenderness in affected skinChanges in skin texture or color over years

Clinical phenotype terms (5)— hover any for plain English
PorokeratosisHP:0200044
Inheritance

Autosomal dominant

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

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Porokeratosis of Mibelli.

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No actively recruiting trials found for Porokeratosis of Mibelli at this time.

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Specialists

2 foundView all specialists →

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 Porokeratosis of Mibelli.

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Community

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Latest news about Porokeratosis of Mibelli

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.How many patches do I have, and which ones are at highest risk of becoming cancerous?,How often should I come in for skin check-ups, and what warning signs should I watch for at home?,Which treatment option is best for my specific patches, and what are the chances they will come back?,Should my family members be tested or examined for this condition?,Is genetic testing recommended for me, and what would the results mean for my children?,Are there any clinical trials or new treatments I should know about?,What sun protection measures are most important for me to follow every day?

Common questions about Porokeratosis of Mibelli

What is Porokeratosis of Mibelli?

Porokeratosis of Mibelli is a rare skin condition that causes unusual patches to form on the skin. These patches have a distinctive raised, ridge-like border that forms a ring around a dry or slightly sunken center. The condition is named after the Italian doctor Vittorio Mibelli, who first described it in 1893. It is sometimes simply called 'Mibelli porokeratosis' or 'classic porokeratosis.' The patches most often appear on the hands, feet, arms, and legs, but can show up anywhere on the body, including the face and genitals. They tend to grow slowly over many years and can range from a few m

How is Porokeratosis of Mibelli inherited?

Porokeratosis of Mibelli follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Porokeratosis of Mibelli typically begin?

Typical onset of Porokeratosis of Mibelli is childhood. Age of onset can vary across affected individuals.

Which specialists treat Porokeratosis of Mibelli?

2 specialists and care centers treating Porokeratosis of Mibelli are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.