Living with T-cell immunodeficiency with epidermodysplasia verruciformis
A rare inherited immune condition with high risk of human papillomavirus (HPV) infection, causing widespread flat warts from childhood.
Understanding T-cell immunodeficiency with epidermodysplasia verruciformis
In childhood, people develop flat, wart-like skin lesions across the body. Total T-cell counts are normal, but the T cells signal poorly and the number of naive T cells is very low. Burkitt lymphoma has also been reported.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Widespread flat warts
- Reddening of the cheeks
- Mouth inflammation (stomatitis)
- Emphysema (lung damage)
- Burkitt lymphoma (reported)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include allergy and immune system specialists and genetic specialists.
- 3Consider genetic testing
Changes in RHOH are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Immune Deficiency Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Immune Deficiency Foundation
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in the RHOH gene cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: t-cell immunodeficiency due to ras homolog family member h deficiency; t-cell immunodeficiency due to rhoh (ras homolog family member h) deficiency; t-cell immunodeficiency due to rhoh deficiency
Patient organizations
- Immune Deficiency FoundationPrimary immunodeficiency · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with T-cell immunodeficiency with epidermodysplasia verruciformis.
Explore research for T-cell immunodeficiency with epidermodysplasia verruciformis
Explore actively recruiting T-cell immunodeficiency with epidermodysplasia verruciformis studies with HealthSpark.
Find actively recruiting studies for T-cell immunodeficiency with epidermodysplasia verruciformis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting T-cell immunodeficiency with epidermodysplasia verruciformis studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for T-cell immunodeficiency with epidermodysplasia verruciformis
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your T-cell immunodeficiency with epidermodysplasia verruciformis experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.