Living with Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome
A rare genetic condition with long-lasting swelling (lymphedema), widespread HPV infections, and low immune cell counts.
Understanding Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome
People have swelling in several parts of the body (lymphedema) and long-lasting, widespread infections with human papillomaviruses (HPV). These infections lead to abnormal cell growth in the genital and anal area (anogenital dysplasia). Lab tests show changes in immune cells, especially CD4+ T-cells. Birthmarks and blood vessel malformations of the skin have also been reported.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these:
- Swelling in many parts of the body (lymphedema)
- Long-lasting, widespread HPV infections
- Abnormal cell growth in the genital and anal area
- Low immune cell counts
- Birthmarks of the skin
- Blood vessel malformations of the skin
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, cancer specialists, genetic specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 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); Cancer specialists (oncologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- 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 and other patient organizations
- 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
GARD says changes in genes (variants) cause this condition. It doesn't name a gene or inheritance pattern.
Also known as: disseminated warts-impaired cell-mediated immunity-primary lymphedema-anogenital dysplasia syndrome; disseminated warts, impaired cell-mediated immunity, primary lymphedema, anogenital dysplasia syndrome; warts, immunodeficiency, lymphedema, anogenital dysplasia syndrome; wild (warts, immunodeficiency, lymphedema, anogenital dysplasia) syndrome; wild syndrome
Patient organizations
- Immune Deficiency FoundationPrimary immunodeficiency · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome.
Explore research for Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome
Explore actively recruiting Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome studies with HealthSpark.
Find actively recruiting studies for Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome 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 Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome 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 Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome
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 Warts-immunodeficiency-lymphedema-anogenital dysplasia syndrome 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.