Overview
T-cell immunodeficiency with epidermodysplasia verruciformis is a rare inherited condition that affects the immune system, specifically the T-cells, which are white blood cells that help your body fight infections. Because of this immune system weakness, people with this condition are unusually vulnerable to certain types of human papillomavirus (HPV) infections. These HPV infections cause a skin condition called epidermodysplasia verruciformis (EV), which leads to widespread, flat, wart-like skin lesions and scaly patches that can appear across the body, especially on the hands, feet, face, and trunk. The skin lesions in this condition are not just a cosmetic concern. Over time, some of these HPV-related skin growths can transform into skin cancers, particularly squamous cell carcinoma, especially in areas exposed to sunlight. The underlying T-cell deficiency may also make affected individuals more susceptible to other infections beyond HPV. Treatment is challenging because there is no cure for the underlying immune deficiency. Management focuses on monitoring and treating skin lesions, preventing skin cancer through sun protection, surgically removing precancerous or cancerous growths, and sometimes using antiviral or immune-modulating therapies. Some patients may benefit from treatments that boost immune function. The condition requires lifelong monitoring by both immunology and dermatology specialists.
Also known as:
Key symptoms:
Widespread flat warts on the skinScaly, reddish-brown patches on the skinWart-like growths on the hands, feet, face, and trunkFrequent or severe skin infectionsSkin cancers, especially squamous cell carcinomaIncreased susceptibility to infectionsLow T-cell counts or poorly functioning T-cellsSkin lesions that worsen with sun exposureRecurrent viral infectionsSlow wound healing
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for T-cell immunodeficiency with epidermodysplasia verruciformis.
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Specialists
View all specialists →No specialists are currently listed for T-cell immunodeficiency with epidermodysplasia verruciformis.
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 T-cell immunodeficiency with epidermodysplasia verruciformis.
Community
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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 specific type of T-cell deficiency does my child have, and which gene is affected?,How often should we have skin examinations to check for precancerous changes?,Is hematopoietic stem cell transplantation an option for our case?,What sun protection measures are most important, and are there specific products you recommend?,Are there any clinical trials or new treatments being studied for this condition?,What signs of infection should prompt us to seek emergency care?,Should other family members be tested for this genetic condition?
Common questions about T-cell immunodeficiency with epidermodysplasia verruciformis
What is T-cell immunodeficiency with epidermodysplasia verruciformis?
T-cell immunodeficiency with epidermodysplasia verruciformis is a rare inherited condition that affects the immune system, specifically the T-cells, which are white blood cells that help your body fight infections. Because of this immune system weakness, people with this condition are unusually vulnerable to certain types of human papillomavirus (HPV) infections. These HPV infections cause a skin condition called epidermodysplasia verruciformis (EV), which leads to widespread, flat, wart-like skin lesions and scaly patches that can appear across the body, especially on the hands, feet, face, a
How is T-cell immunodeficiency with epidermodysplasia verruciformis inherited?
T-cell immunodeficiency with epidermodysplasia verruciformis follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does T-cell immunodeficiency with epidermodysplasia verruciformis typically begin?
Typical onset of T-cell immunodeficiency with epidermodysplasia verruciformis is childhood. Age of onset can vary across affected individuals.