Overview
Familial cutaneous collagenoma (also sometimes called familial cutaneous collagenomata or connective tissue nevi of the collagen type) is a rare inherited skin condition. In this disease, the body produces too much collagen — the protein that gives skin its structure and strength — in certain areas of the skin. This extra collagen builds up and forms firm, flesh-colored or slightly raised bumps or plaques on the skin, most often on the back, chest, and upper arms. These skin growths are not cancerous and are generally painless, but they can be cosmetically bothersome. The condition usually appears during childhood or around puberty and tends to run in families. It is passed down in an autosomal dominant pattern, meaning only one copy of the changed gene is enough to cause the condition. Some people with familial cutaneous collagenoma may also have heart problems, particularly a condition called cardiac conduction defects, which affect the heart's electrical system. This makes it important for people with this diagnosis to be evaluated by a heart specialist. There is currently no cure for familial cutaneous collagenoma. Treatment focuses on managing the skin lesions if they cause distress, and monitoring for any heart-related complications. Skin lesions may be treated with laser therapy or minor surgical procedures for cosmetic reasons. Regular heart monitoring is an important part of ongoing care.
Key symptoms:
Firm, flesh-colored or slightly raised skin bumps or plaquesSkin growths most commonly on the back, chest, and upper armsMultiple skin lesions that increase in number over timeSkin lesions that are painless but may be cosmetically concerningIrregular heartbeat or heart rhythm problemsFainting or near-fainting episodes related to heart rhythm issuesFamily history of similar skin growths
Clinical phenotype terms (7)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Juvenile
Begins in the teen years
Treatments
No FDA-approved treatments are currently listed for Familial cutaneous collagenoma.
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Specialists
View all specialists →No specialists are currently listed for Familial cutaneous collagenoma.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Familial cutaneous collagenoma.
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Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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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.Do I need a heart evaluation, and how often should my heart be monitored?,Should my family members be tested or screened for this condition?,What are my options for treating the skin lesions if they bother me?,Is genetic testing available to identify the specific gene change in my family?,Are there any activities I should avoid because of possible heart involvement?,What warning signs should prompt me to seek emergency care?,Are there any clinical trials or research studies I could participate in?
Common questions about Familial cutaneous collagenoma
What is Familial cutaneous collagenoma?
Familial cutaneous collagenoma (also sometimes called familial cutaneous collagenomata or connective tissue nevi of the collagen type) is a rare inherited skin condition. In this disease, the body produces too much collagen — the protein that gives skin its structure and strength — in certain areas of the skin. This extra collagen builds up and forms firm, flesh-colored or slightly raised bumps or plaques on the skin, most often on the back, chest, and upper arms. These skin growths are not cancerous and are generally painless, but they can be cosmetically bothersome. The condition usually ap
How is Familial cutaneous collagenoma inherited?
Familial cutaneous collagenoma follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Familial cutaneous collagenoma typically begin?
Typical onset of Familial cutaneous collagenoma is juvenile. Age of onset can vary across affected individuals.