Sebocystomatosis

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ORPHA:841OMIM:184500L72.2
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Overview

Sebocystomatosis, also known as steatocystoma multiplex, is a rare inherited skin condition where many small cysts form just under the skin. These cysts develop from the oil-producing glands (sebaceous glands) that are normally attached to hair follicles. The cysts are usually filled with a yellowish, oily fluid and can appear anywhere on the body, though they most commonly show up on the chest, armpits, upper arms, and face. They typically feel soft or rubbery and range from a few millimeters to about a centimeter in size. Most people with sebocystomatosis notice the cysts beginning to appear during puberty or early adulthood, though they can sometimes be present from birth or early childhood. The cysts are generally not painful unless they become infected or inflamed. While the condition is not life-threatening, it can cause significant emotional distress and self-consciousness because of its visible appearance on the skin. Treatment is mainly focused on managing symptoms and improving appearance. Options include surgical removal of individual cysts, laser therapy, and drainage procedures. There is no cure that prevents new cysts from forming. The condition is lifelong, but with proper skin care and treatment, many people manage it well. A dermatologist is the main specialist involved in care.

Also known as:

Key symptoms:

Multiple small cysts under the skinCysts filled with yellowish or oily fluidCysts most common on the chest, armpits, upper arms, and faceSoft or rubbery lumps that can be felt under the skinCysts that may become red, swollen, or painful if infectedCysts that may drain a cheesy or oily substance if rupturedGradual increase in the number of cysts over timeSkin changes that may cause cosmetic concerns or embarrassment

Clinical phenotype terms (3)— hover any for plain English
Adenoma sebaceumHP:0009720Steatocystoma multiplexHP:0012035
Inheritance

Autosomal dominant

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

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Sebocystomatosis.

View clinical trials →

No actively recruiting trials found for Sebocystomatosis at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Sebocystomatosis community →

No specialists are currently listed for Sebocystomatosis.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

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 Sebocystomatosis.

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Community

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Latest news about Sebocystomatosis

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Caregiver Resources

NORD Caregiver Resources

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

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

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.What treatment options are available for my cysts, and which would you recommend for my situation?,Will new cysts keep forming, and is there anything I can do to slow that down?,Should I have genetic testing, and what does a positive result mean for my family members?,What are the signs that a cyst has become infected, and when should I seek urgent care?,Are there any clinical trials or newer treatments I should know about?,How often should I come in for follow-up appointments?,Can you refer me to a counselor or support group to help with the emotional side of this condition?

Common questions about Sebocystomatosis

What is Sebocystomatosis?

Sebocystomatosis, also known as steatocystoma multiplex, is a rare inherited skin condition where many small cysts form just under the skin. These cysts develop from the oil-producing glands (sebaceous glands) that are normally attached to hair follicles. The cysts are usually filled with a yellowish, oily fluid and can appear anywhere on the body, though they most commonly show up on the chest, armpits, upper arms, and face. They typically feel soft or rubbery and range from a few millimeters to about a centimeter in size. Most people with sebocystomatosis notice the cysts beginning to appea

How is Sebocystomatosis inherited?

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