Living with Infective dermatitis associated with HTLV-1
A rare, long-lasting skin condition in children linked to the HTLV-1 virus, with eczema and skin infections.
Understanding Infective dermatitis associated with HTLV-1
Eczema (red, scaly, crusted skin) mainly affects the scalp, forehead, eyelids, neck, armpits, and groin. A fine bumpy rash, a crusty runny nose, and skin infections can occur. Some people may later develop other HTLV-1-related conditions. It often begins in childhood.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes:
- Repeated, long-lasting eczema
- Fine bumpy rash
- Crusty runny nose
- Skin infections (Staphylococcus or Streptococcus)
- Swollen lymph nodes
- Mild to moderate itching
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 skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Children's Skin Disease 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
GARD says the skin infections are thought to result from immune weakening caused by the HTLV-1 virus.
Also known as: idh; idh gene family; infective dermatitis associated with human t-lymphotropic virus type 1; infective dermatitis associated with human t-lymphotropic virus type i; isocitrate dehydrogenase gene family
Patient organizations
- Children's Skin Disease FoundationSkin diseases · 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 Infective dermatitis associated with HTLV-1.
Explore research for Infective dermatitis associated with HTLV-1
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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