Infective dermatitis associated with HTLV-1

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Overview

Infective dermatitis associated with HTLV-1 (also called IDH or HTLV-1-associated infective dermatitis) is a chronic skin condition that occurs in people infected with the human T-lymphotropic virus type 1 (HTLV-1). This disease most commonly affects children and teenagers, though it can also appear in adults. It is considered a rare complication of HTLV-1 infection and is thought to result from the virus weakening the immune system, making the skin more vulnerable to bacterial infections, particularly Staphylococcus aureus and beta-hemolytic streptococci. The condition causes a severe, recurring eczema-like rash that typically affects the scalp, ears, neck, armpits, groin, and areas around the nose and mouth. The rash is often crusted, oozing, and can be very itchy and uncomfortable. Swollen lymph nodes (lymphadenopathy) are also common. The skin lesions tend to come back repeatedly even after treatment, which can be frustrating for patients and families. Treatment mainly involves long-term antibiotics to control the bacterial skin infections, along with topical treatments to manage the rash. While antibiotics can improve symptoms significantly, the condition often returns when treatment is stopped. Importantly, infective dermatitis associated with HTLV-1 is considered a marker for increased risk of developing other serious HTLV-1-related diseases later in life, including adult T-cell leukemia/lymphoma (ATLL) and HTLV-1-associated myelopathy (HAM/TSP). Regular medical follow-up is therefore essential.

Also known as:

Key symptoms:

Chronic eczema-like rash on the scalpCrusted, oozing skin lesions around the earsRash in the armpits and groinSkin rash around the nose and mouthRash on the neck and upper bodySevere itchingSwollen lymph nodesWatery discharge from the noseCrusting of the nostrilsRecurring skin infectionsFine scaling of the scalp resembling dandruffSkin thickening in affected areasPale or washed-out appearance of the skin in affected areas

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Nov 2026Comparison of Cerebraca Wafer Plus Temozolomide Versus Temozolomide Alone in Recurrent Glioblastoma

Everfront Biotech Co., Ltd. — PHASE2, PHASE3

TrialNOT YET RECRUITING
Sep 2026Monitoring of Neurological Symptoms, Treatment Tolerance, and Quality of Life Using the Resilience PRO Electronic Patient-reported Outcome Application in Patients With IDH-mutated Glioma

Assistance Publique - Hôpitaux de Paris — NA

TrialNOT YET RECRUITING
Jun 2026The GLIOMAX Study: MT027 Allogeneic CAR-T for Recurrent Glioma

T-MAXIMUM Pharmaceutical Inc — PHASE2

TrialNOT YET RECRUITING
Jun 2026Temporally-Modulated Pulsed Radiation Therapy Versus Standard Radiation Therapy for the Treatment of Newly Diagnosed, IDH Wildtype, MGMT-Unmethylated Glioblastoma

NRG Oncology — PHASE3

TrialNOT YET RECRUITING
Jan 2026

ACYCLOVIR: New indication approved

FDAcompleted
Jan 2026Vorasidenib Maintenance for IDH Mutant Astrocytoma

European Organisation for Research and Treatment of Cancer - EORTC — PHASE3

TrialRECRUITING
Sep 2025Phase 0 With Expansion Phase Clinical Trial of Quisinostat Plus Radiotherapy in Newly-diagnosed and Recurrent Grade 4 IDH-Wildtype Glioblastomas

Nader Sanai — EARLY_PHASE1

TrialACTIVE NOT RECRUITING
Jul 2025Continuous Glucose Monitoring for the Management of Hyperglycemia in Patients With Glioblastoma

Mayo Clinic — NA

TrialRECRUITING
Jul 2025Amino Acid PET-based Response Assessment in IDH-mutant Gliomas (APPEAR)

LMU Klinikum

TrialRECRUITING
Jul 2025ViCToRy: Vorasidenib in Combination With Tumor Specific Peptide Vaccine for Recurrent IDH1 Mutant Lower Grade Gliomas

Katy Peters, MD, PhD — PHASE1

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

1 available

Gamimune N

Immune globulin intravenous, human· Bayer Corporation■ Boxed WarningOrphan Drug
For prophylaxis of children with clinical or immunologic evidence of human immunodeficiency virus to decrease the frequency of serious and minor bacterial infections and the frequency of hospitalizati

For prophylaxis of children with clinical or immunologic evidence of human immunodeficiency virus to decrease the frequency of serious and minor bacterial infections and the frequency of hospitalization, and to increase the time free of serious bacterial infections.

No actively recruiting trials found for Infective dermatitis associated with HTLV-1 at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Infective dermatitis associated with HTLV-1 community →

Specialists

9 foundView all specialists →
AB
Achiléa L Bittencourt
Specialist
1 Infective dermatitis associated with HTLV-1 publication
BR
Bárbara L Rosa
Specialist
1 Infective dermatitis associated with HTLV-1 publication
TS
Thadeu S Silva
Specialist
1 Infective dermatitis associated with HTLV-1 publication
MD
Maria A Dias
Specialist
1 Infective dermatitis associated with HTLV-1 publication
IA
Iguaracyra Araujo
Specialist
1 Infective dermatitis associated with HTLV-1 publication
CM
Christian Grommes, MD
NEW YORK, NY
Specialist
PI on 8 active trials
NM
Nader Sanai, MD
PHOENIX, AZ
Specialist
PI on 8 active trials
JP
Jasper Gerritsen, MD PhD
Specialist
PI on 5 active trials

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Infective dermatitis associated with HTLV-1.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Infective dermatitis associated with HTLV-1Forum →

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Latest news about Infective dermatitis associated with HTLV-1

Disease timeline:

New recruiting trial: The RECSUR-study: Resection Versus Best Oncological Treatment for Recurrent Glioblastoma (ENCRAM 2302)

A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1

New recruiting trial: Metabolic Characterization of Space Occupying Lesions of the Brain

A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1

New recruiting trial: ASTX727 in Recurrent/Progressive Non-enhancing IDH Mutant Gliomas

A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1

New recruiting trial: UNITy-BasED MR-Linac Adaptive Simultaneous Integrated Hypofractionated Boost Trial for High Grade Glioma in the Elderly

A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1

New recruiting trial: A Surgical Window of Opportunity Clinical Trial of Troriluzole in Recurrent IDH Wild-Type Glioblastoma

A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1

New recruiting trial: ViCToRy: Vorasidenib in Combination With Tumor Specific Peptide Vaccine for Recurrent IDH1 Mutant Lower Grade Gliomas

A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1

New recruiting trial: Allogenic Adipose-Derived Mesenchymal Stem Cells for the Treatment of Recurrent Glioblastoma or Recurrent Astrocytoma in Patients Undergoing Craniotomy

A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1

New recruiting trial: The PALSUR-study: Palliative Care Versus Surgery in High-grade Glioma Patients (ENCRAM 2203)

A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1

New recruiting trial: Vorasidenib Maintenance for IDH Mutant Astrocytoma

A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1

New recruiting trial: ERAS-801 for the Treatment of Resectable and Progressive or Recurrent IDH Wildtype Grade IV Glioblastoma or Astrocytoma With an EGFR Amplification or Mutation, ERAS801-SARG Trial

A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1

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.How long will my child need to take antibiotics, and what are the risks of long-term antibiotic use?,What signs should I watch for that might indicate the disease is getting worse or developing into something more serious?,How often should we come in for follow-up visits and blood tests?,Should other family members be tested for HTLV-1?,What is the risk of my child developing adult T-cell leukemia/lymphoma or HTLV-1-associated myelopathy later in life?,Are there any activities or environmental factors my child should avoid to prevent flare-ups?,Is it safe for a mother with HTLV-1 to breastfeed other children?

Common questions about Infective dermatitis associated with HTLV-1

What is Infective dermatitis associated with HTLV-1?

Infective dermatitis associated with HTLV-1 (also called IDH or HTLV-1-associated infective dermatitis) is a chronic skin condition that occurs in people infected with the human T-lymphotropic virus type 1 (HTLV-1). This disease most commonly affects children and teenagers, though it can also appear in adults. It is considered a rare complication of HTLV-1 infection and is thought to result from the virus weakening the immune system, making the skin more vulnerable to bacterial infections, particularly Staphylococcus aureus and beta-hemolytic streptococci. The condition causes a severe, recur

How is Infective dermatitis associated with HTLV-1 inherited?

Infective dermatitis associated with HTLV-1 follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Infective dermatitis associated with HTLV-1 typically begin?

Typical onset of Infective dermatitis associated with HTLV-1 is childhood. Age of onset can vary across affected individuals.

Which specialists treat Infective dermatitis associated with HTLV-1?

9 specialists and care centers treating Infective dermatitis associated with HTLV-1 are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Infective dermatitis associated with HTLV-1?

1 patient support program are currently tracked on UniteRare for Infective dermatitis associated with HTLV-1. See the treatments and support programs sections for copay assistance, eligibility, and contact details.